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Walking the Treatment Path to a Brighter Future

Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Naomi Creek 00:10
Welcome to a new season of "Getting Clear on Psoriasis". I'm your host, Naomi Creek, National Coordinator at GHLF Australia. Together, we'll explore the ups and downs of managing psoriasis, the challenges, the breakthroughs, and everything in between, through the voices of people who've lived it and who treat it.

In today's episode, we're talking about the realities of living with psoriasis, the physical challenges, the emotional toll and the long road many people face in finding the right diagnosis and treatment. We also dig into the barriers that get in the way of care.

I'm joined by two guests. Jana, who was diagnosed as a teenager and has worked her way through years of treatments to finally find a biologic that's made a life-changing difference, and Krystal, who was diagnosed in childhood and shares openly about the stigma she faced, the exhaustion of trial and error treatments, and her hopes for finally finding something that works. Their honesty, resilience, and perspectives are powerful, and I'm so grateful they've joined us.

Thank you so much for joining us, Krystal and Jana. I'll start with you, Jana, can you share a little bit about your diagnosis journey?

Jana 01:24
I think I was, like, an early teenager when I noticed that I had psoriasis. Or I didn't know what was wrong, but I, sort of, I think I had, like, little bits on my face and then perhaps on my abdomen a little bit. And I remember my dad taking me to see a dermatologist after trying some topical steroids from the GP, and it, sort of, like, wasn't going away. And then, certainly after puberty, it, sort of, got much worse. And I remember going to the dermatologist — which wasn't actually that far from our house and where we lived. But being a teenager, I didn't have access to a car or, like, my own, sort of, schedule in terms of school and things, and I was doing, sort of, photo therapy when I felt, like, it was a little bit burdensome on my family and for me to also try and have an after school job and things, like, that as well. So, it, sort of, started when I was early, just before, like, pre-pubescent, I would say.

Naomi Creek 02:17
Wow. A difficult time for you as a teenager. And so, did you try other treatments after that?

Jana 02:22
I did the phototherapy for a while, and then I found it particularly difficult in terms of scheduling and needing a lift from mum or dad to, sort of, pick me up and drop me off. And also, the clinic they required you to, sort of, book in. And I was, like, this is impossible with school and going there and getting picked up and — as well as school and everything else.

And I think then I decided to leave it for a little bit, because the dermatologist — essentially, at the time — was, like, if — I was having a little bit of success, but not a great amount. And the dermatologist said that the next step would be to taking these oral medications, of which she wasn't happy to prescribe a teenager. And essentially just, sort of, said, go away and come back in a few years, or when you're a little bit more of an adult, and where it's a bit more ethical, I suppose, to take medications that, sort of, strong. I think they had problems back then with the ethics of prescribing it to a teenager.

And then, yeah, I suppose throughout my teen years, in my early 20s, I attempted to try, sort of, natural remedies and, sort of, other, sort of, alternative medicines, including changing my diet and not having gluten or dairy, or trying to do sort of, yeah, really selective dieting and things, like, that. And including seeing, like, a few natural health practitioners. And then, I think I was in my mid to late 20s, from when I was maybe 28, I started seeing a dermatologist. Actually, one interstate, so I would travel quite some time, at quite an expense, to see the dermatologist that I see now, and I have been seeing for probably three years. And yeah, it's fantastic. Very good.

Naomi Creek 03:54
I'm glad to hear you found a dermatologist you're happy with. So how did your treatment plan change from there?

Jana 03:59
Yeah, so I — initially with the dermatologist — I started just using, sort of, topical steroids. I guess there was, like, a little bit of a ladder to climb, to go down the pathway of then, I guess getting to where I am at now, in which I have an injectable biologic. And that I've been taking that since about July this year, and it's been absolutely incredible. Like, my skin is essentially clear, and I feel fantastic, and I have, sort of, no side effects or anything, like, that, which is just awesome. It's so, so good. But in order to get to where I am at now with this injectable, I've had to, sort of, jump through hoops, so to speak. So, it's been quite a process and quite an expense.

Naomi Creek 04:40
It's amazing. That's terrific news, and it's working well for you. Krystal, what about yourself? How was your diagnosis?

Krystal 04:46
I think it was when I was three, but I remember I was in preschool, and the teachers at preschool told my mum that I had school sores. And, yeah, it wasn't. Like, I think she even went to a couple of doctors. And they also said it was school sores, and then went to someone and said, "No, it's clearly psoriasis". So, I don't really remember having it when I was super, super young, but definitely in my school years, I remember that that was not great.

Naomi Creek 05:15
How did it affect the school years?

Krystal 05:17
Just, kids can be so cruel. And just the relentless teasing, and that made me become pretty quick with my fists. I wish I had someone that would have stood up for me. You know, I remember when I was very young, maybe five, maybe six. I can't remember what the cream was. It was something that the chemist had made up, I think, and they failed to mention that I couldn't go out in the sun with the cream on. So, I'm, like, head-to-toe with this cream. My auntie took me to the shops, and I got in the sun, and I started screaming. I felt, like, I had petrol pored all over myself, and it didn't actually help the psoriasis. So, it's just been, basically, one big, like, journey of me getting stuff doesn't work. So, I'm, like, at the point now where I haven't used anything for quite some time, because what I was finding was the stress of what options being things that aren't going to work — and the stress makes my psoriasis come faster than any cream can get rid of. So, I'm, like, fighting a losing battle, but I am going to talk to my doctor and see if there is anything new out there, because on got the back of my thighs, but when I sit down, it hurts, like, it's taken off that layer of scale, and it's just, like, bare skin now. So yeah, it's just exhausting, really.

Naomi Creek 06:30
Wow. I'm really sorry that happens here at school. Any, sort of, bullying is not okay, so that's awful. Yeah, it must have been a really hard time.

There are a lot of great things out there now — and this is something we hear a lot from people living with psoriasis — is trying new things that, perhaps, don't work. And maybe, you know, this might have happened five, 10 years ago, and they haven't been back to their doctors to see because they don't believe anything's going to work. So, I do encourage you to go back and to see what's available to your GP, and then, ideally, to get to see a dermatologist too.

Jana, you're still seeing a dermatologist, but you've obviously been through the hoops with trying different treatments. What makes you feel like you want to keep trying new treatments? Because so many haven't worked?

Jana 07:12
I think where I'm at right now, I've got this treatment that's working, and I just cross my fingers and hope that I have this for as long as possible. Because, from my understanding of all the, sort of, injectable biologics, the one that I'm on is quite successful and quite good for the type of psoriasis that I suffer with. And certainly, my skin is lovely and clear, like, it's not perfect, but it's so, so much better than it was, and I feel, like, my quality of life has improved. The thought of it suddenly failing and then having to not know where to go next and have the dermatologist say, "Oh, well, okay, we'll go back and try this one, or we'll try this one", is a little bit nerve wracking.

But I also feel quite confident that, like, now I'm at this point with this medication that's working so well, I should just enjoy it and be grateful that I've gotten this far and that I can suddenly, like, have this, sort of, reprieve. Because I feel, like, over the last few years — especially the last, like, five, almost 10 years of my life — this is, like, a really important time in my life for me to love myself and feel, like, I'm living my life to the fullest.

Of which my psoriasis got so bad that I felt, like, it was just really affecting every single part of my life, where it was preventing me from wanting to go out and meet people or go overseas or participate in work fully, like, romantic relationships and friendships or going to the beach, things that I love doing, it was preventing me from doing. And now I'm lucky enough to, sort of, be able to do, essentially, whatever I want because of this medication. So, I think that's what keeps me going forward.

And I have a lot of respect and time for my dermatologist, and I trust him a lot, and I think that that's really, really important as well. I think, not only for people suffering from psoriasis and seeing a dermatologist, but any, sort of, health specialist. I'm paying fairly good money to see him, and I want to know that I trust him and I understand what is happening to me and what I'm participating in. It's a joint effort. I like to think of it.

Naomi Creek 09:16
That’s so good, that, to hear that you've got a good relationship with your dermatologist. It is really important to have a great team around you. Yes, some of those things you mentioned, it does affect so many aspects of your life, doesn't it? That we may not think about.

Krystal, what other parts of your life have been affected by living with psoriasis? Some of the day to day things you have to, sort of, encounter?

Krystal 09:38
Pretty much everything that Jana has said, but also, I wouldn't be able to work a job around food or anything, because I'm just flaking all over the place. When you go to your friend's house, you sit on their lounge, and then you get up and you can see that, like, there's all this skin has come off, so flaking on people's furniture.

Naomi Creek 09:55
And how do you go at places, like, hairdressers and beauty therapists? Is that a difficult situation to go to?

Krystal 10:02
No, because the beauty therapist, in what, that was never something that I did, but when I had to go to the hairdressers, occasionally they'd be like, "Oh, what's that? Oh, psoriasis", and it was no problem with hairdressers. And I'm not the kind to get, you know, pampered or anything, like, that. So, I missed out on the beauty... I think once a hairdresser said to me that she thought that I had nits. I've never had nits in my life, but I'm like, "No way. It's just, it's psoriasis". She goes, "Oh, I can't cut your hair today".

Naomi Creek 10:29
How did that make you feel?

Krystal 10:30
That actually made me feel really bad. It took me back to being a little kid getting bullied about having psoriasis.

Naomi Creek 10:38
It's just awful. Just a few words can change. Yeah, how you feel, can't it?

Krystal 10:42
Yep, and I felt dirty and disgusting and gross and I wasn't any of those things.

Naomi Creek 10:48
That's terrible. Krystal. I'm really sorry to hear that. When you're trying to educate friends and other people in your life, how do they respond to that?

Krystal 10:55
Um, friends wise and relationship wise. It's never been a problem. No one has ever, no one's ever cared. It's only, it's only me that cares. It's like, I don't have psoriasis when I'm with my friends and my family, that's good. That's not a problem for me.

Naomi Creek 11:07
And what about yourself, Jana?

Jana 11:10
I think for my friends, I guess they were concerned about how much of a burden I felt, like, it was, and how much it, sort of, held me back in my life. And there were certainly elements of having psoriasis — and I guess it progressively, like, also got worse over the course of a few years — where I could outright say, like, this is absolutely affecting my love for myself and my self-worth, and I don't want to show people my body, and I don't want to be intimate with people. Or, yeah, I don't want to go to the beach, and I don't feel pretty, and I don't feel like I am able to show my body around or just wear a T-shirt and shorts. Krystal, like you said, you know something, everyone just walks around however they want, you know.

But I think my friends were, sort of, concerned, of like, those psychological effects and how much it was, sort of, affecting my life, and they never said anything or made me feel humiliated or uncomfortable to the point where I felt, like, it was a problem. I know that they love me, and my family loves me regardless, but people can certainly be quite insensitive. And that, sort of, humiliation of having to explain to people, and usually it's people that you don't even know, that somehow make me feel more humiliated than anyone else.

Where, for example, I was like, on a beach going for a swim, laying in the sun, and these people came up to me. I had no idea who they were. Never seen them before in my life. And they say, "What's that? All over your body? It looks like you've been bitten by lots of mosquitoes". I think, like, "I have psoriasis. That's what it is". And they go, "Oh, you better go see a doctor about that". And I thought to myself, "I'm not saying to you, have you seen how hideous you look in the mirror this morning?" Like, I know what my body looks like. It's just so humiliating and insulting for other people to comment on your appearance in that way.

But I suppose, yeah, like, I guess it just, sort of, thickens your skin, so to speak. And I just became a little bit more savvy with how I would respond to people like that. And then, I guess, in intimate relationships and things like, that I still, sort of, like, let it hold me back a tad — where I constantly had these feelings of just not being super attractive or beautiful or sexy, for example, and had to, like, really overcome that myself. With my friends and in relationships that I've had. That's, sort of, been a main theme, I guess, that I really have to work on.

Naomi Creek 13:30
Yeah, so it's something you're really just constantly working at, I guess, isn't it? Because it's a chronic condition, you are confronted with these things all the time. So, well done for getting through that. And I can empathize with thickening skin dealing with folk.

Krystal, how about you? I mean, yeah, mental health is such a huge component of living with something like psoriasis. So, how do you manage that with folk that maybe say something insulting, or, yeah, how do you get through that?

Krystal 13:58
I don't know. I'm just, like Jana said, I've got a thicker skin. I've got those. "Oh, you've got, you've been bitten by mosquitoes. It must be sand flies from the beach. It's this, it's that." I haven't really let it bother me in later years. It probably does get me depressed, but I have depression anyway. So, I have bigger depression fish to fry than the psoriasis.

Naomi Creek 14:19
Do you find help? Talking with other people with the same condition is helpful?

Krystal 14:24
This is the only time I've done it. I don't, I had one friend, and he passed away a year ago, so now I'm just down to "duck egg" (zero). It's just me.

Naomi Creek 14:32
Oh, what about online support groups? Do you go to any of those or seek help from anyone else?

Krystal 14:38
No, I join them, and then I, once I joined them, I've forgotten about it. And yeah, so no, I don't seek any help.

I'm gonna (going to) pursue getting something for the psoriasis, like Jana was saying about an injection. That sounds like heaven to me, because the big thing was — I mean, I had the methotrexate, which was an absolute nightmare — But other than that, my whole life has been, every day, at least once a day, pretty much head to toe, covering myself in cream. That is so, just so depressing. It takes so much time, and it's hard to wash the bloody cream off, and then you got to put it back on, and then certain ones stain absolutely everything. And it's just, it's hard work, it's hard to work. And it is, yeah, I suppose it does. Now that I hear myself, I suppose, yeah, it does give me depression.

Naomi Creek 15:25
I can imagine. And when you're hearing, I guess, success stories, like, with Jana saying how some of the things have been working for her, does hearing that give you hope that there might be something else out there for you to try?

That's terrific. And what do you think, what are the barriers been for seeking treatment options, I know, like, seeing a dermatologist. Obviously, there's ongoing costs, so costs must be a big factor for a lot of people.

Krystal 15:49
Yep, cost is, is what's holding me back. You know, just because of years of going to specialists and dermatologists and it cost you a fortune and getting absolute nowhere. Like, I've got a lot of things going on with myself, health wise, and everything is just, like, just, it's bill after bill after bill, and I've not been able to go and see specialists that I need to because I just don't have the money, I don't have spare money to put into something that isn't, like, more important.

Naomi Creek 16:17
Yeah, I really get that Krystal, honestly.

Jana, what do you feel some of the barriers for people getting treatment for their psoriasis?

Jana 16:25
I think a huge barrier for, even myself at times, has been the financial burden of going to see a GP. Well, you have to get a GP referral to a dermatologist. In the town that I lived in, there actually weren't any dermatologists with their books open. And so, I chose to commute to Sydney, essentially, and I still do from anywhere in Australia.

I have family in Sydney, which is really lovely, but that's quite a financial burden to go back and forth every three months. Like, there's been times where I've seen a dermatologist, maybe three times in six months. $200, $250 at each time, plus travel costs.

I think another barrier is there's lots of people out there, I think, that have tried to see a dermatologist, perhaps a couple of times, and then they're getting negative side effects, and they, sort of, start to develop, like, maybe a mistrust, or even they've had negative experiences in other areas of the health system, and so they begin to hold the health system, sort of, in contempt a little bit, and they want to maybe pursue natural approaches. And they're still expensive.

So, I think certainly the cost of accessing dermatologists or specialists, and then the cost of the medications or the treatment regime that someone may have you on. And then also, I guess, like, just the perseverance and the dedication of, "Oh, this one didn't work so I'm going to do something else", and I have to go back and explain what's happened.

There's certainly been times where I've had some really frank, really intimate, I guess, discussions with my dermatologist like, "No, sorry, this medication isn't working for me because I've got thrush all the time". Like, no one wants to have that sort of conversation with a dermatologist. But I like to think that I've got a really good relationship with him, and as I said earlier, I trust him implicitly, and there's certainly been times where I think he's an excellent doctor, and I'd recommend him to friends and family as well. But I can see that that wouldn't be so easy for other people. They don't have the same background and knowledge and perhaps experiences that I have had that's led to me feeling that way about modern medicine and things like that.

And I think there's even some pamphlets of medications that I've tried, or even one that I'm on now, and it says we don't really know how this works, in layman's terms, and I can see how that's a bit scary for some people. People want to know the evidence, or know the confidence and how medications can help you, and how it's going to, the side effects, and if it may have any side effects, or if it may be damaging in any way. People really want to know. And I think there's a big push now for, sort of, natural and alternate treatments and things like that as well, which I don't think there's anything wrong with. But maybe that, coupled with the financial burden and those sorts of things that I just spoke about, maybe that acts as quite a barrier too.

Naomi Creek 19:17
Yeah, that's makes so much sense what you're saying. And we hear, we hear a lot about that from other patients as well, that those difficult conversations that are hard to have with people. How do you think that GPs and dermatologists could help with that a little bit more, to help make their patients feel more comfortable about talking about it?

Jana 19:36
I think that in the health system, in Australia, in the next couple of years, there's going to have to be a massive push for GPs to be more broadly trained and have a wider scope of practice and to really know their shit, so to speak. Where, like, I've got friends that are like, "Oh, I think I've got psoriasis", for example, on their fingernail, and I'm like, "Yeah, that's psoriasis. Yeah, yeah, go see your GP, get a referral to see a dermatologist". And then she comes back to me and she says, says, "Jana, he wants to do a punch biopsy. He wants to do this. He's going to do a skin scraping". I said your GP should be able to really, essentially look at it and say, if it's not eczema, if they're not sure what it is, they should just be referring to a dermatologist anyway.

There's some, like, barriers going on there with GPs, where they're like, "Oh, it's okay. Just try this steroid cream or just try this". I think GPs, honestly, sometimes they just need to listen to what the patient wants. And it's like, "I want a referral to see a dermatologist. I also want to go to a dermatologist that I like and I trust and I get on well with."

So, for example, like, in a town that where I lived, there were dermatologists, none with their books open. But even I'd had experiences with one of them when I was younger, the one that my father had taken me to, and I thought, I don't want to go to her. I don't, I didn't like her. I didn't trust her. I felt really judged by her. I felt like I was being a bit pedantic and a bit emotional and carrying on a little bit too much, and that's not what I want. I want, like, "I'm still purchasing. I'm still a customer." At the end of the day, I'm paying them really good money to provide a service, and I want to feel confident and satisfied that they have my best interests at heart. They're not just taking my money and throwing medications at me for the sake of them billing Medicare. But I also understand that they need to charge, you know, money for how the health system works in Australia.

But yeah, it's that listening to patients and educating them, I guess, in terms that patients understand. Not everything needs to be in layman's terms for every patient. Myself, for example, I have a health background, so I think that I have fairly in depth conversations with my specialist about particular things, but I genuinely believe that he would have really easy to understand genuine, frank discussions with someone that didn't work in health and have, like, my, sort of, background or education, and I think that that's super important, that that builds trust and comfortability as well. I wouldn't be able to share things with him if I didn't trust him,

Naomi Creek 22:02
And you think that they're the key elements that you're finding with this dermatologist, that openness to have those discussions that's made it a winning combination for you?

Jana 22:11
I suppose, the plan as well, from the get go, he's like, "We're going to try this, and then we can try these things". And this is just the way it has to be for Medicare, unfortunately, and the PBS in Australia, which I understand. And there were certainly elements where I was like, "Oh, I've done this". And he's like, "Oh no, we're gonna have to go back a step". And I'm like, "Oh dear, oh". And so, like, I've probably lengthened the process a little bit more than it needed to be. But he was very clear, "A, B, C, D, this is where we want to be, because that's the newest, most, best, fantastic treatment. Let's try that. I think you'll succeed really well on that. Okay, this is a new medication. These are the side effects. These are probably what you want to watch out for the most. If this happens, email me, call me."

Like, he's open, he's direct, he's honest. He's not there bothering himself or involving himself overly. "And how did you go with this?" or anything. Like, it's still very professional and very lovely. I think that they're definitely the difference. You want a doctor that you trust is listening to you.

Naomi Creek 23:10
Wonderful insights there. Jana, thank you. Krystal, would you, like, to share anything about your experiences with your doctors that was positive or negative?

Krystal 23:19
Honestly, I think that's kind of like, all on me at the moment, because it's been so long since I've seen a specialist. Got creams. Maybe a year or two ago, I approached my GP and honestly, prescribed me a tube of something, and it would have been, like, I don't know, like, the tube was, like, this big. It wouldn't have even done one leg.

I think it's on me, because I'm living backwards. I'm not living in the future where things have progressed and became better, and there is more out there. And I think, when I was given the methotrexate, that was supposed to be, like, a miracle drug, like, the specialist said that for some people, that's just life changing, you know?

And it was life changing for me, but in the absolute worst possible ways. It messed with my brain so much that I couldn't function in daily life, and it was not great, and it didn't do anything for my skin. But after hearing Jana talking, that gives me some hope that I need to get off my backside and I have a new GP now who is really good, very, very, very helpful and caring. I'm going to try for something new, because I'm just, it hurts.

Naomi Creek 24:20
I'm glad to hear that you're gonna seek some more treatment options. Krystal. That's terrific news. And I wanted to also mention that you could also ask your GP about seeing a dermatologist through a public hospital. So, that's another way for people to reduce their costs, because it will, it would be free to see. There would be probably a reasonable long waiting list, but something that you may want to put your name down for in the future, to see someone through a hospital that's an option for you as well.

Krystal 24:49
I recently got connected with the Aboriginal Health Service, and they've been really, really, really good to me. They've helped me more than my whole doctor's experience my whole life. And I will approach them, and they'll get me off my backside and onto the right path.

Jana 25:03
I was gonna say, as well. Krystal, depending on where you live in Australia, if you're far from, like, large towns and cities, then often you can get bulk billed to see specialists in some capacity, but the AMS, like, the Aboriginal Medical Service, would absolutely help you explore those options as well as to what you're entitled to and like, how best to get you to a dermatologist.

Krystal 25:27
Yeah, thank you.

Jana 25:28
Yeah.

Krystal 25:28
They will help. Yeah,

Naomi Creek 25:29
Yes. Definitely worth asking any doctors if you can be bulk billed, because many will do that if they know your circumstances. And Krystal, I'm so pleased to hear you are connected into the Aboriginal Medical Service and they're providing some support for you. That's fantastic. Jana, what is your best advice for someone who is just starting out on their psoriasis journey?

Jana 25:49
I suppose, like, in hindsight, from looking where I am now, where I was three or four years ago, where I was really suffering with psoriasis, and I could just see it was, like, getting worse, and it was affecting my life, and I just felt miserable because of it. So, I guess my advice would be to find a dermatologist or even just a GP, and then, like, explore your options and keep pushing with the doctor or the dermatologist until you get results that you feel, like, you're comfortable with and you're happy with, because there's certainly some really cool treatments out there at the moment.

And if at any stage, I guess, you feel as though doctors aren't listening to you, like, be persistent, and don't give up. Don't be afraid to go to a different doctor or a different GP or ask for another opinion even. Like, this is the 21st Century, and we have really good medical care in Australia, and we need to use it.

Naomi Creek 26:46
Thank you. Jana and Krystal, what do you know now that you wish you knew when you were first diagnosed?

Krystal 26:53
I just thought psoriasis was a skin thing. My whole life I never actually knew that it was an autoimmune disease. And the problems that I've got, it's funny, they all tie around psoriasis. Like, this is something that I've only, like, learned in the last couple of years, but all of these things are related because I didn't even know what an autoimmune disease was, and I've had it my whole life.

Naomi Creek 27:13
Thank you both so much. I hope you've enjoyed chatting as much as I have. You've both been so open about your life with psoriasis. I know our listeners will just love hearing all the things we talked about here. Keep up the good fight, and I hope life keeps moving in a positive way for you both.

Jana 27:29
Yeah, thanks, Naomi, thanks Krystal as well. It's been lovely to, like, connect with someone else with psoriasis and have a discussion. Yeah, yeah. It's been really good. Thank you.

Krystal 27:37
Yeah, you, too.

Naomi Creek 27:43
Thank you for listening to getting clear on psoriasis. I'm Naomi Creek, and I hope today's conversation offered some clarity and support for wherever you are in your psoriasis journey.

This episode was made possible with support from BMS Australia. If you, like, what you've heard, be sure to rate our podcast, write a positive review, and spread the word by sharing with your family and friends. It will help more people like you find us. And before you go, take a moment to explore the other great podcasts on the GHLF Podcast Network. You can find them all at ghlf.org/listen.

Narrator 28:21
Be inspired, supported and empowered. This is the global Healthy Living Foundation, Podcast Network.

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Managing Your Mental Health While Living with GPP

Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Jilly Carter 00:08
Hello and welcome to “Getting Clear on Psoriasis.” This season, we bring you stories about people living with a form of psoriasis called generalized pustular psoriasis, also known as GPP. We aim to help people with GPP improve their overall quality of life and well-being through discussions on mental health, advice and tips for managing personal and professional relationships, and guidance on self-care. This podcast is for general information purposes only, and should not be substituted for medical advice. Please consult a medical professional with any questions regarding a medical condition, advice, diagnosis, or treatment. GPP is a rare, life-long condition that can affect the whole body. Symptoms can be ongoing and may last for several months. GPP can have an impact on emotional and psychological well-being too. The unpredictability of GPP means people living with a condition can experience feelings of anxiety and depression. In this first episode, I’m joined by Nerea Moran, who lives with GPP, and Dr. Peter van de Kerkhof from Radboud University Nijmegen Medical Center, in the Netherlands. We’ll explore how GPP can affect mental health and how those living with GPP can manage it. Nerea, tell us a little bit about yourself.

Nerea 01:37
So, my name is Nerea. I am from Spain; I’m from León, north of Spain, and I live in Ireland for the last eight years. I have GPP since I’m five years old, only diagnosed when I was seven – I have lived all my life with this disease. I am a nurse, working in the dermatology department, at the moment.

Jilly Carter 01:58
Peter, what about you?

Peter van de Kerkhof 02:00
I’m Peter van de Kerkhof. I’m a professor of dermatology at the Radboud University Medical Center in Nijmegen, and I’ve been there, chair of the department, for nearly 30 years. I have been treating patients, with skin diseases, and also generalized pustular psoriasis was a main interest at our department.

Jilly Carter 02:25
And I’m Jilly Carter. I’m an ex-journalist and broadcaster. I’m now a communications consultant, specializing in health care. I’m your host for this podcast. Nerea, tell us a little bit about your experience of living with GPP on a daily basis.

Nerea 02:41
Well, I have GPP since a very young age. My symptoms started when I was five years old, only diagnosed when I was seven, and I have lived all my life with this disease. It has come times where the flares were more often, and I felt it was almost constant that I had this disease. And I have been times where the disease had give me a break of even few years, and I almost got to forget that I had this disease. So, my relationship with GPP has changed over the years. One of my first memories I was, actually, in the trolley, I think, outside the school, and I remember my mom and some other mothers concerned, and they’re looking at something in my hands. So, obviously, at this point, I probably was five years old, and I didn’t understand what was going on. But just like, it’s one of my first memories, that they were kind of focused on something that was going on on my hands. And then, growing up, I remember feeling different because the kids, or the mothers, would be focused on my skin, would be concerned, would be asking questions to my mom, and at the point, obviously, I didn’t know what was the difference between me and the other kids, but as I grew older, I could see that my skin was different, and that people were scared, or even disgusted at times that they wouldn’t want to play with me because of what was going on on my skin.

Jilly Carter 04:17
So, you experienced these symptoms from a very young age, it must have been just awful. Have these physical symptoms that you experience, have they changed over time? Have they got worse? Have they got better? What’s your daily experience of living with the physical symptoms?

Nerea 04:35
So, it goes by cycles. It’s been differently as I’ve been growing up. So, the first years in my childhood, I would have flares almost every year, and they could last several months. And then in my teenage-era, I will have less flares. And then after I turned 20/21, I had a few years where, with a gap, that I didn’t have any flares, and in the last five years, I’ve had three flares. So, it goes by cycles. But whenever I have a flare, or a flare starts, it goes through the whole process as always, it goes to cover me, 90% of my body, and few months of the illness being active.

Jilly Carter 05:21
So, this must have a major impact on your quality of life and the activities that you participate in, sport, or whatever, when you feel that you’ve got to cover up 90% of your body, tell us a little bit about how that has affected you, how you deal with it.

Nerea 05:39
So, I’ve been always very active. Even as a kid, I loved going swimming, I loved athletics, and obviously, when I had the flares, I had to stop swimming because of the chlorine in the swimming pools, or athletics, I couldn’t run because if it affected me behind the knees, that would be very painful. So, growing up, I have tried to look for different sports and different activities that I could do, that wouldn’t affect me so much. But obviously when it does cover 90% of my body, there will be times where I wouldn’t find the energy, either physically or mentally, to go ahead with the activities that I like to do, so it’s a constant battle when it’s active, and is slightly less battle when it is not active. But the months after a flare, I often feel like my energy levels are the same, or even my, the anxiety of “is the flare coming?” could even like stop me from from keep going with the activities that I like.

Jilly Carter 06:44
So, you’ve got an inbuilt resilience to the obstacles that have been thrown in your path, and you’re finding ways around it. What about your support system: your parents, your friends, potentially a partner? What effect has it had on them and your relationships? Because it’s not just you, is it? It’s the people around you as well?

Nerea 07:08
Yes, so my parents and my family have been my biggest advocate of my life, but I could see, as well, growing up that that was having an effect on them, feeling that I wasn’t improving, or that I was long time with the skin being affected, that obviously affect them as well, and they were suffering it as if it was on their own skin, because I was their kid. Then in terms of friends, I have had trouble connecting with people at times, and making like long time relationships. I do have my dearest friends that they’ve been since always with me, but I have found people over the years that will come and go, and, obviously, when your skin isn’t perfect, that they will not treat you in the same way. And in terms of partners, I have had different relationships, but I feel lucky in a way, that when a flare has come, they’ve been understanding, and they’ve been supportive.

Jilly Carter 08:08
As far as other people’s experiences with GPP are concerned, there’s a lot out there on social media outlets. Have you accessed them? These social media outlets? Do you think it helps to seek out information in such a way?

Nerea 08:25
Well, I think connecting with people and with other patients is a way of healing yourself as well, especially the psychological effect of GPP. Since I was a kid, I’ve been enrolled in different patient associations, and even though patient associations, I will still feel a bit different, because I wouldn’t see people with GPP, but I will see people with psoriasis and their experience, or their resilience, and their support also help on the way, and then connecting on these networks, and being able to help other people with the GPP, or general psoriasis, it also helped me. So, I think connecting with people will always be a positive part.

Jilly Carter 09:12
Thank you. Peter, I’d like to turn to you now. We know that GPP is a rare condition, in general, how many people with rare conditions or illnesses do you see?

Peter van de Kerkhof 09:25
Yes, I think, as a dermatologist, I see a lot of patients, actually, with some rare conditions. But moving to GPP, as an entity, then I would say it’s quite seldom. And myself, we have a specialized center, which is focused on psoriasis and also focused on generalized pustular psoriasis, or GPP, I would say that I’ve seen in my life about 25 patients with GPP -and I’ve been working 40 years as a dermatologist.

Jilly Carter 09:59
Nerea, I don’t know when you received your diagnosis, but Peter, is it quite a difficult thing to diagnose, and typically, do people have to wait a long time for a diagnosis?

Peter van de Kerkhof 10:11
It is not a difficult thing, but just for reason that it is seldom, a lot of general doctors do not recognize it, and it is so important that very fast the right diagnosis is made. But it can be that when people are coming in a General Hospital, where also the general dermatologist may not have so much experience with generalized pustular psoriasis, that several episodes will have been there before the diagnosis is made. So, in answer to your question, it is not a difficult diagnosis, but it is quite seldom, and that is the reason why, quite late often the diagnosis is made.

Nerea 11:04
For me, it took like two years to get diagnosed. So, I think I agree totally with what Peter says, that even though the symptoms are quite specific, the general knowledge is maybe not, like, it’s not as common for people to understand the illness.

Jilly Carter 11:24
Peter, in terms of the mental health challenges of GPP, and Nerea has shared a lot of those challenges with us, not just the physical, when did you first see a person dealing with these mental health challenges of GPP?

Peter van de Kerkhof 11:40
Well, I already saw for the first time a patient with GPP when it was in my first year as a resident. And what for me was striking is indeed the enormous fatigue, and the enormous distraction from the daily activities during flares. It is an impressive picture, GPP, where patients suffer very, very much indeed. Partly, it is just for reason of what the patient is feeling with the painful skin, with that, the whole skin is covered with pustules, and then the phase of scaling is coming. This is very problematic for the patient, but there is another aspect, that is there is massive inflammation of the skin, and in between the flares, there is also a tremendous loss of quality of life and anxiety. For the patient never knows when generalized pustular psoriasis will relapse again. This is unannounced and quite as a sudden may happen. It is never that generalized pustular psoriasis is asking you, “is it okay that we have a relapse today?” No, it’s coming, and it, you have to live with that.

Jilly Carter 13:10
It seems that emotional stress is a trigger for flares. So, are you very careful to keep your stress levels as low as possible? In order to, potentially, avoid a flare.

Nerea 13:26
Well, I tried, I think everybody tries their best not to be stressed – It’s no good for you. But I don’t know if it’s because I have psoriasis or I have had this all my life, I find that I get quite stressed or anxious at times, and obviously, over time, I’ve tried to find tools to control that part, the side of me, but it’s so unpredictable, like I’ve had episodes where things happen in my life, and I couldn’t be more stressed, and I didn’t have a flare, and then episodes where a big stress comes and it does cause a flare. So, as life goes on, I’ve done, like, a lot of mindfulness in yoga, and other exercises that, obviously, has helped me to manage my stress levels. But at the same time, as years pass by, I do not like to focus so much on like, oh my god, some how stressed I’m right now, because life happens. And if you focus so much on how stressful that is, that might cause you more stress, and that might cause your skin to be a flare. So, I just try to, not ignore the correlation between stress and skin, but mind it as its own thing.

Jilly Carter 14:45
Peter, as a doctor, as a dermatologist, you must welcome all the things that Nerea has just said in terms of managing her mental health when she’s having a flare. Is that the kind of thing you say to your patients? To get out there, don’t get obsessed with the disease, and find ways of managing your mental health?

Peter van de Kerkhof 15:08
Yes, I think that, actually, Nerea, has really explained this so well to us, and I really admire the way how that you are managing the really difficult relationship between stress as a triggering factor on one hand, and the disease on the other hand. That is, indeed, stress is part of life; that is, I do not know any person who has life without stress, and stress also has a function – it moves us forward, but it often is the balance. It’s a continuous learning process. So, on one hand, it is the way how to manage stress, not to do that too obsessional and too stressful. That is when you think that you have to do at least three hours of yoga every day. Then in that way, that is in itself, stress. So, that’s not the best way. Find the best way how to manage this.

Jilly Carter 16:19
I think a lot of people are seeking out other avenues for support. I believe there are a lot of apps, there are websites. What is available out there? Self-help books, etc.

Peter van de Kerkhof 16:32
Well, there is availability of many in many countries. The psoriasis patient associations also have activities for generalized pustular psoriasis; I see it in the Netherlands, but also the International Federation of Psoriasis Associations, the IFPA. So, on the website of IFPA, you can also get access, really, to information sites of generalized pustular psoriasis.

Jilly Carter 17:04
I believe there’s also something called “GPP and Me” website.

Peter van de Kerkhof 17:08
Of course, I think it’s important that every patient with generalized pustular psoriasis becomes an expert in that disease. In a way that you collect knowledge, you collect information that you are well-informed on that, I think it’s important that patients are stimulated to collect knowledge, and really, to understand also what’s going on. When there are children with generalized pustular psoriasis, it’s very important that also the parents are educated.

Jilly Carter 17:47
Absolutely, but maybe preparing for a dialogue with your dermatologist before you visit them might be a good idea to get all your thoughts and anxieties in order. Nerea, have you found that? And for people, who are newly diagnosed, have you got any tips for them on perhaps, how to prepare themselves for their first conversation with a dermatologist, a medical professional?

Nerea 18:15
So, the first thing, yeah, like read about it, access appropriate website, listen to what the doctor has said. But sometimes maybe at the beginning, slow down, because if you get so much information, “oh, this is good for the skin,” “this is bad for the skin,” yeah, but you don’t know what’s gonna work for you. So, it’s so important that you get to know your own GPP. I think for every patient is slightly different, what might work with someone, doesn’t work with somebody else. So, to understand how the process works within you might take a few flares, might take a few years to completely understand, and take it slowly, bit by bit, understand what’s the triggers that might cause your psoriasis to flare. They could flare by flare, and read as much as you can when you feel strong enough to understand those parts of the illness.

Jilly Carter 19:15
Thank you so much – you’re such an inspiring person, and it’s very clear that you’re not being defined by GPP; you’re getting on with your life, which is so hopeful. Peter, have you anything to add? Before we wind up.

Peter van de Kerkhof 19:29
Well, I think that Nerea described it very well, the long term course of the disease. I think it’s an example for patients how to cope and to manage this disease.

Jilly Carter 19:46
Nerea, Peter, thank you so much for sharing your knowledge and experience with us today. Thank you for joining us on “Getting Clear on Psoriasis.” We hope this episode helps people with GPP improve their overall quality of life and well-being. If you like what you’ve heard, be sure to rate our podcast, write a positive review, and spread the word by sharing with your family and friends. It’ll help more people, like you, find us. If you have any questions, thoughts, or suggestions for us, you can send us an email at podcast@ghlf.org This podcast was produced on behalf of Boehringer Ingelheim and distributed by the Global Healthy Living Foundation. Discover more about GPP at www.patient.boehringer-ingelheim.com/gpp

Narrator 20:53
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

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Understanding Flares: The Physical Reality of Living with GPP

Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Jilly Carter 00:06
Hello and welcome to “Getting Clear on Psoriasis.” This season, we bring you stories about people living with a form of psoriasis called generalized pustular psoriasis, also known as GPP. We aim to help people with GPP improve their overall quality of life and well-being through discussions on mental health, advice and tips for managing personal and professional relationships, and guidance on self-care. This podcast is for general information purposes only, and should not be substituted for medical advice. Please consult a medical professional with any questions regarding a medical condition advice, diagnosis, or treatment. In this episode, I’m joined by Nerea Moran, who lives with GPP, and Dr. Peter van der Kerkhof from Radboud University Nijmegen Medical Center in the Netherlands. We’ll be discussing how people with GPP can manage mental and physical challenges to improve their well-being. Nerea, tell us a bit about yourself. And then Peter.

Nerea 01:17
So, I am from Spain, I’m from León, and I have lived in Ireland for the last eight years. I’m a nurse, and I have GPP since the age of five.

Jilly Carter 01:28
And Peter.

Peter van de Kerkhof 01:29
I’m Peter van de Kerkhof. I’m a professor of dermatology at the Radboud University Nijmegen Medical Center.

Jilly Carter 01:36
And I’m Jilly Carter, and I’m your host for today’s podcast. Nerea, tell us a little bit about the impact that GPP has had in your life.

Nerea 01:47
So, GPP is, as it name says, generalized, it can cover my whole body for long periods of time. So, it can indeed affect almost every aspect of my life. For example, in my career, I have studied nursing in a time where my skin was quiet, and like any other nursing student, I will finish my degree and I will start working, and I found myself in very dynamic jobs, like in anesthesia, in theater, and also in the ICU while the pandemic was happening, and I didn’t have any problems at the time. But then, when I had a flare in the middle of the pandemic, and I had to be off site, I couldn’t work for a long time. I had a kind of a reflection within myself that I have a debate I didn’t want GPP to rule completely my life, but at the same time, I acknowledged that I needed to find a way to still be able to work and to still be able to carry on my life even though I had a flare. So, that impacted the decisions that I made on my career, and I have to move away from jobs, like the ICU or theater, because it was so physical working with my hands, or to have it like weight on my body, I couldn’t handle those kind of like physical aspects of the job while on a flare, so it has impacted the way that I decided to go back to study, and to be able to navigate other options, so I could still be working even though I had a flare.

Jilly Carter 03:39
So, you really have ensured that throughout your life, and you’ve had GPP since the age of five, that this disease is not defining you. It’s restricting you in some ways, but you’re finding ways around them, and it seems to me that you’re working very hard to get the balance right between your physical symptoms and your mental state.

Nerea 04:02
Yeah, that’s right, even though I have long periods of times that the disease is not active, I will still be mindful, in the background, that I have this, and that I choose in my career or my life different aspects that will help me in the event that I have a flare, for example, not working in the ICU. Because I know that if I’m in that job that it requires so much more physical than other jobs, for example, now in dermatology, that I can be more educating patients can be more more in like an office job almost, that doesn’t require so much of my physical abilities to carry on with the job; I don’t need to stop. I can still be active and still keep going with it.

Jilly Carter 04:50
Absolutely. Peter, you’ve had a very long career as a dermatologist, a long and very distinguished career, and yet you haven’t seen that many patients with GPP throughout that time, have you?

Peter van de Kerkhof 05:05
That’s right, but in total, I think in my whole career of 35 years, I would say I have seen about 25 patients with GPP.

Jilly Carter 05:15
Right. I mean, GPP is, as we know, it’s a rare condition. You yourself have said that, you know, over 35 years, you’ve only experienced 25 cases. What I think is potentially helpful, I don’t know if you agree, is the amount of information on social media at the moment. And if you’ve just been diagnosed, you may be very hungry for information. And as I understand it, there’s a lot of blocking of pictures of skin conditions like GPP on social media. What do you feel about that? Because wouldn’t that help with diagnosis and understanding of the disease? If the visual pictures were there?

Peter van de Kerkhof 05:59
It is indeed very, very important to get information from the visual pictures. Of course, how does generalized pustular psoriasis look like? But also important that you get information, information on what sort of triggering factors are there, which may aggravate the condition. And how can you cope with generalized pustular psoriasis?

Jilly Carter 06:28
Absolutely. Peter, What about the physical symptoms of this disease, and what’s it like living with them on a daily basis? You know, do people sleep well if they’ve got itchy skin, they’re tired, there’s redness. Tell us a little bit more about these unpredictable physical symptoms.

Peter van de Kerkhof 06:49
What, in my experience, is when a flare starts, the patient feels this already before, in many situations, the patient feels fatigue, feels not exactly fine in the general way. And then pain starts, painful skin, and then you see some redness, and followed by some pustules. And that’s also the time that often fever is there, and other complaints. And then the fever starts, can be very sick, but then scaling dominates. A lot of scaling. And following the scaling, actually, it can be that the skin again, looks totally normal, and then after a variable period of time, it can be maybe a few weeks, but sometimes a few months, in some patients, a few years, again, a relapse occurs. So, during the flares, there are these feelings, but in between the flares. It can be that the skin is maybe not painful, but more itchy, and that there is a superficial scaling, and maybe some red areas, red scaling areas in between. And it is not exclusively the skin, with where you see changes, but is also the feeling of illness, and of more general symptoms, like malasa, like feeling not well, and this can differ. The degree of the general symptoms can differ between patients, but also in one patient, I have seen, in many patients, how different episodes are there.

Jilly Carter 08:53
Nerea, would you like to add to anything like that, in particular, your lived experience and the physical effect it has on you. I mean, when you’re having a flare, do you sleep at night?

Nerea 09:06
So, Peter has described quite well at how the cycle of the flare starts. And basically, I’ll wake up one day and I’ll see some pustules, and maybe the pain is not there yet, but within two or three days, those pustules become like a range, like in a circle way. And within a week or two, I’ll start feeling the pain underneath the skin, kind of like pins and needles, kind of like a crawling sensation underneath, and I will know that, okay, this is it’s a flare coming even before the physical symptoms are completely visible. You might only see some redness; you might only see a few postals, but the general feeling, and that kind of pins and needles pain under the skin starting, then is when I know that a flare is coming. So, normally, kind of starts in the flanks of my torso and kind of spans to my arms, spans to my abdomen, my back, then the legs. When it comes to the legs in that kind of circular way, within a week, it can just feel like an explosion. So, it comes all over my body, in my heel, in the areas where it started first, but it will progress in other areas, like the neck, normally is one of the last areas that appears, but is one of the most painful areas where anything like even the t-shirts, even the softest t-shirt that I have, it will be painful when it affects my the soles of my feets or the back of my hands. The palms I can’t grab almost anything, because everything will feel like pins and needles under the skin. And obviously, the pain is really a factor for my daily basis; it affects everything. And then the pain, the itchiness, also, I feel like my skin is very tight. It doesn’t matter how much cream I put on, how much moisturizer, and how much I try to keep my skin healthy. I feel like it’s pulling apart almost, and wake up in the middle of the night with that intense tightness of the skin, with the itchiness at the same time. And if your scratch is painful, you might cause some boons as well, like, obviously, no no one thing, but in the middle of the night, you might be scratching, and then you wake up and you have some blood in your bed sheets, so it is affecting in such a large area that it does cause you a lot of distress, mentally as well.

Jilly Carter 11:56
And can I ask you, what do you do? Do you close the front door and not go out? Do you avoid social events?

Nerea 12:06
Well, there is times where, where you want, would you want just to crawl into bed, not want to deal with anything, because you can’t even deal with yourself. But obviously, as time goes on, you can’t get the psoriasis, you can’t get the GPP dictate what you do. So, when I start on the flare, I always try to start positive, knowing that I’ve lived that many times, and that I have come across the other side and be back to be healthy and be back to have normal skin. So, having that in mind that it goes through a cycle and I will recover, helps me, and then I try to do different adjustments to my life, even the way I dress. I will try to cover up as much as possible, but not only for people not to see, which sometimes it does help not to show to everyone, because not everyone will understand what’s going on. But also it’s a protection, because your skin protects you from the outside world, and when it’s affected in such a way, everything is painful. So, when you cover, you put a good layer of moisturizer, and then you cover it with cotton, for example, I find there’s the softest and what it helps me the most, it kind of like helps me to carry on with with life, to go out and do my shopping as well. I will feel when my skin is affected in that way is that I have a lot of cold, I have coldness, I’m shivering when the skin is shading and there’s all this scaling, it does feel that you’re missing a layer of your skin so you’re cold. So, by putting appropriate clothes, I feel way more comfortable, and I feel that I am able to, little by little, do more and more things that help me, not only with a physical state, by doing as much exercise as I can in that moment, but also with my mental state as like going out for a walk will help as well.

Jilly Carter 14:16
Have you changed your diet at all?

Nerea 14:18
I try to be as healthy as I can. I try to have a balance in my life, and I feel like that might have helped me as well, to keep healthy in other aspects, not only on my skin, and that kind of correlates with it, but I don’t think cutting down food, in general, might be helpful. I think just have a healthy lifestyle is what is helpful.

Jilly Carter 14:45
Peter, from a medical perspective, what advice do you give to patients, particularly those who are newly diagnosed? Do you recommend drinking less alcohol, stopping smoking? Does diet actually make any difference?

Peter van de Kerkhof 15:01
Well, it’s very difficult, actually, to retrieve scientifically based information on changes of diets related to generalized pustular psoriasis and with respect to lifestyles. What is, scientifically, makes sense is to avoid triggering factors where possible. Psychological stress, it is very helpful to inspire patients or pay give patients advice in how to getting in their life a sort of a balance, not to avoid stress, but just to find a balance and to help actually, also to make the recovering from stress maybe more easy. It is important to be aware, as a patient, that factors in life may influence the course of the disease. Not everything is scientifically proven, and it is a sort of discovery. So, there is not a certain scientifically based anti-GPP diet, but be open for what the cause of the disease is, and what helps, and what does not help.

Jilly Carter 16:28
Yeah, we’ve heard the word balance a couple of times in this podcast, and I think balancing the physical part of it along with a mental is obviously critical. As Nerea, you found out you’ve lived with GPP since you were five; for people, who perhaps have been newly diagnosed, would you suggest any kind of mental approach to the disease? When you are feeling very depressed, and as you said, you didn’t want to go out of the house, things like writing a journal, meditation, stuff like that, to keep the balance, so that you don’t tip over into depression.

Nerea 17:11
Yeah. So, I think we should give ourselves a big load of kindness and to practice gratefulness; journaling is good as well. I keep it normally a journal when I have a flare, also like to try to understand a little bit more my disease and how my skin works. I try to be as healthy as I can. Know only when I have the flare, but after, and that helps me to kind of feel better with myself before, during, and after the flare. So, try to eat healthy, practice, sport, go out with friends. Obviously, when I have flare, I will have to do adjustments. I will still go out with friends, but I won’t drink, because I know alcohol is a trigger. Even though I have a healthy diet in my normal life, when I have a flare, I will try don’t get processed food, because I know that that’s, you know, more fatty and might cause some more inflammation to my body. So, I tried to do some research to how to, how could I be healthier even and having this disease, and how can I do different adjustments that does help me feel better within myself, and helps me as well to manage the depression, and manage the anxiety that comes alongside having a GPP flare. But I feel like over the years, after every flare, learning a bit more about myself, and I’m learning a bit more of my coping mechanisms; I’m learning a bit more of how I feel, and giving myself some kindness and some understanding, and that also helps me to kind of cope on, and keep going, and keep as positive as I can. Also helps, because I know this is cycle. I know that it has passed other times. So, why this time wouldn’t pass? You know? So, it’s just it’s a learning process. Every time I have a flare, I learn a bit more of my skin and a bit more of myself, and it does help to be in the present, and it does help to reflect on it when it has passed.

Jilly Carter 19:31
Absolutely, and you’re doing all of this, I presume, with a support network of friends and family, who are on your side, and give you the time and space to cope with this. Peter, do you agree that a strong support network is really critical for helping people feel less isolated? If you’ve got a strong sense of community lifting you up, you’re less like to fall into depression and other mental conditions.

Peter van de Kerkhof 20:04
Oh, absolutely, that is we all, I think, are social people. In a way, we are part of a network. And with a chronic inflammatory skin disease, and particularly, with general pustular psoriasis, the network can give also the power of recovery. When you have a flare, or when you are depressed, or when you have anxiety, also people in the network feel this with you, and it is very much of help. It is a little bit mixed how people deal with work situation – It could be that when people say at work too often that they cannot do certain things for reason of their skin disease, that it may be, yeah, a little bit a problem, that they may lose their job or something like that. But in general, that is not the best situation. The best situation is that, based on the loyalty that the work has with good people, they also say, Well, okay, we understand when you have problems, and then, please, let’s be flexible. And when you need, really your time in the morning or either to put on ointments or really to get going, there is no problem, as long as we are informed that you come half an hour, one hour, or two hours later, there are difficult times, and there are good times. And I think it is the most ideal situation in a work situation, that there is a sort of an organic process of interaction with patients with GPP.

Jilly Carter 21:56
To wrap up this conversation, what types of resources do you think could help people more with GPP improve their mental and physical well-being, Peter?

Peter van de Kerkhof 22:10
Well, I think it is important to look at the resource sites that are from the National Psoriasis Organizations, but also the International Federation of Psoriasis Associations, the IFPA. That IFPA is a very good resource to have a look at, but also is useful, of course, is to have a sort of inter-vision groups, very helpful if you can contact other patients with generalized pustular psoriasis to share actual experiences.

Jilly Carter 22:46
And Nerea, what do you think about the apps that support mental and physical self-care? There are a lot of seemingly good ones out there. Do you access them yourself?

Nerea 22:59
Well, I will have general ones, just to keep a track on my activity or my generalized wellness. I will have yoga apps that will use for mindfulness. I will have different, I think technology can help you, and if you’re creative and you try to adjust what is out there to your specific needs at the moment, as is something is in the last that keeps changing. So, what it might work for you in some weeks might not work you for other weeks. I think it’s important to keep creative and keep also in the present of what’s limiting you in that moment, so you can adjust what’s the best way to manage.

Jilly Carter 23:47
Nerea, Peter, thank you so much for taking part in this podcast. Thank you for sharing your journey and your experience. Thank you.

Nerea 23:57
Thank you.

Peter van de Kerkhof 23:58
Thank you.

Jilly Carter 23:59
Thank you for joining us on “Getting Clear on Psoriasis.” We hope this episode helps people with GPP improve their overall quality of life and well-being. If you like what you’ve heard, be sure to rate our podcast, write a positive review, and spread the word by sharing with your family and friends. It’ll help more people like you find us. If you have any questions, thoughts, or suggestions for us, you can send us an email at podcast@ghlf.org This podcast was produced on behalf of Boehringer Ingelheim, and distributed by the Global Healthy Living Foundation. Discover more about GPP at www.patient.boehringer-ingelheim.com/gpp

Narrator 25:03
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

×

Living with GPP: The Impact It Can Have and Ways to Help Manage It

Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living foundation podcast network.

Jilly – Host 00:07
Hello and welcome to Getting Clear on Psoriasis. This season, we bring you stories about people living with a form of psoriasis called generalized pustular psoriasis, also known as GPP. We aim to help people with GPP improve their overall quality of life and wellbeing through discussions on mental health, tips for managing personal and professional relationships, and guidance on self-care. This podcast is for general information purposes only and should not be substituted for medical advice. Please consult a medical professional with any questions regarding a medical condition, advice, diagnosis, or treatment. In this episode, I’m joined by Heather, who lives with GPP, and her care partner Dalton to share their experiences of managing personal relationships, social life, and work when it comes to GPP. Thank you both so much for joining us today to talk about your experiences with GPP. I’m really excited to dive into this conversation, but before we do, can you tell us a bit about yourselves.

Heather – Guest 01:21
Well, I’m 41 and have three children with my fabulous husband. And our children are 16, 11, and seven. I run after our children constantly. I homeschool them, so they are definitely a full-time job. I have had GPP since I was 17, so you can do the math. It’s been a few years.

Jilly – Host 01:45
Absolutely, yes it has.

Jilly – Host 01:48
And Dalton, what’s your relationship to Heather? She’s your wife, isn’t she?

Dalton – Guest 01:53
She sure is.

Jilly – Host 01:54
And how long have you been married?

Dalton – Guest 01:56
Eight years.

Jilly – Host 01:58
Perfect. And how many years has it been since you learned of Heather’s diagnosis of GPP?

Dalton – Guest 02:03
Better than eight years, but I’d say probably nine or 10. It was very early in our relationship when she told me that she had… Psoriasis is what she called it. I didn’t learn about the actual GPP full term until later on.

Jilly – Host 02:20
Let’s talk a little bit about what life is like for both of you living with GPP and what your journey getting to the diagnosis was. Heather, was that a fast track for you or did it take quite a while to get the proper diagnosis?

Heather – Guest 02:37
It didn’t take as long as for some people that I have heard, but it was quite an interesting journey in the beginning. I was 17 and I had sores all over me from head to toe. I was literally covered and I was so dizzy.

And so my grandparents got me in with their dermatologist and I went there and he said he needed to do a biopsy. And two weeks later, I went back and got the results. My dad went with me to that appointment and it was a whirlwind of words, so I didn’t catch everything because it was a lot. And we left with brochures.

Jilly – Host 03:22
GPP is a lifelong, unpredictable condition. How did it impact on your plans for the future at the age of 17? What did you think?

Heather – Guest 03:33
Yeah. At 17, it was a lot, and it was a lot that I guess I wasn’t ready for. And as I got older, the more years that went by, the more symptoms came along with it, and that’s when it all started to click. Oh, okay. Now it all sense.

Jilly – Host 03:54
So what role has Dalton played in supporting and helping you throughout this? How has he best been able to support you?

Heather – Guest 04:03
He’s been a trooper, especially when it’s kind of the unknown, unknown for him and me, because you never… Even though you know, you don’t know. You don’t know how bad it’s going to be next year. You don’t know how bad it’s going to be five years from now. But he’s been my rock. Days that literally I can’t walk anymore, he picks me up and carries me. I mean, he has literally been everything. Days that I have to stay in the bed, he’s just like, “It’s okay. Stay in the bed. I’ve got it.” And he does.

Jilly – Host 04:37
It sounds like you’ve got a tremendous communication between the two of you. Has that strengthened over time?

Heather – Guest 04:43
Some days our communication is everything. But just like in any marriage, there’s some days that communication is not everything. But I would say for me to be so chronically ill, he is amazing and I couldn’t ask for anything more.

Jilly – Host 05:08
So have you actively taken the role of educating yourself about GPP?

Heather – Guest 05:16
Yes. I have had to become an advocate when it comes to my health in general, when it comes to GPP and everything else.

Jilly – Host 05:28
Right. And for people who perhaps have just been newly diagnosed, what resources would you recommend to somebody who wants to educate themselves?

Heather – Guest 05:38
So definitely medical conferences are huge. The psoriasis conferences that you can attend, you can attend virtually and not have to go in person. Those are huge. And then GPP and Me, this is an amazing concept. And Facebook support groups, those are a great way to connect with other people that are going through the same thing that you are, and just to be able to connect with them and shoot ideas back and forth and how you’re able to cope and get by, that’s been a huge help all in all.

Jilly – Host 06:18
You’ve shared that you have three lovely children. What kind of impact has GPP had on your family?

Heather – Guest 06:26
Everything goes in the calendar. Everything is pretty well planned because I have good days and I have bad days, and you have to plan accordingly. I can’t overdo it, because if I overdo it, I’m going to pay for it and then I’m going to have two bad days. Everybody has to put everything in the calendar, that way there’s no like, “Hey, Mom is going to be out for four days in a row, because if Mom’s out for four days in a row, then Mom’s going to be no good. Like, I just have to plan everything out and it’s got to be prioritized.

Jilly – Host 07:07
Do you find that you have to alter your diet at all with GPP?

Heather – Guest 07:11
Yes. Between GPP and all the things that come along with GPP as the years have progressed, it has definitely minimized what I’m able to eat, and drink for that matter.

Jilly – Host 07:27
Dalton, what impact has GPP had on your life and your life with Heather? Have you got enough experience enough now to know when she’s going to get a flare and the best way to support her?

Dalton – Guest 07:42
Yeah. I don’t know that I could predict it to say, but there are signs. She’s a very strong-willed woman and will push herself to accomplish whatever goal she has set for the family, or like I said, an outing or what have you. And then, next day or two, it’s very much so a rest day for her.

Jilly – Host 08:09
And the two of you together, what do you think are the key lessons that you’ve learned about keeping your relationship loving and strong and durable while living with this chronic rare disease of GPP?

Heather – Guest 08:26
Dating.

Heather – Guest 08:27
Yeah. Making sure that we still date, making sure that we still take time. We still make sure that we watch an episode of something in the bed every night before bedtime. Once the kids are in their rooms, we still watch an episode and have our time every night, and try to make time for our date night at least once a month to have our time.

Jilly – Host 09:00
You agree, Dalton, of course?

Dalton – Guest 09:02
I do. I will add just a flexibility in plans. Let’s say whenever a flare-up does occur and it’s time to lay down and rest, then we all kind of lay down and rest together, and just be able to spend that time together. It’s not a, all right, well, you go shut yourself in your room and quarantine. You’re not sick. It’s, we’re in this together. So yeah, there’s tasks, household chores that still have to be accomplished, but I feel like we still take the time to kind of sit down together and rest together and spend time with each other.

Jilly – Host 09:42
Now, obviously you live in a community. I’m just wondering what the community knows about your GPP. Is it something that you openly share with them? Do you share your story with other people?

Heather – Guest 09:58
So I have a couple close friends that know the ins and outs of all the illness stuff, everything going on. But for the most part, no, because when you look fine on the outside, they don’t really get it when you don’t feel well. And so they’ll look at you and be like, “Oh, but you look okay.” But I try to share on social media and I’ll share stuff from other people and from psoriasis and from all the other websites just to let people know it’s not all on the outside, you know?

Jilly – Host 10:42
We’ve talked quite a lot about the family life, the social life, the impact on your activities, the fact that you have to keep a well-detailed calendar so that everybody knows what the week looks like, and sometimes it can look very different when that week comes. But what about your working life? You say that your children take up all of your time and you homeschool them. What about you, Dalton? How does that work for you?

Dalton – Guest 11:13
I do have a career job in which I work. And so most of the time by the end of day when I come home, all the homeschooling is complete. And I’ll ask the kids, “What did you learn today?”. Simple, I guess, dad stuff about school.

Jilly – Host 11:35
And Heather, you have to be very well organized, don’t you, in terms of when you need to rest, managing your energy levels? That’s an awful lot to take on board when you’ve got three children at home.

Heather – Guest 11:46
We’ve got a good system here. My oldest she does her own thing, and she’s actually going to be starting college next year. So she’s very independent and doesn’t need really any help at all. The younger two are a completely different story. They are very easy when it comes to, “Hey, Mom’s having a bad day and it’s all going to be done here in the bed today.” And they’re like, “Okay, cool.” So it’s very easy when it comes to that. Or, “Hey, today you’re going to learn from YouTube shows.” They’re cool. So…

Heather – Guest 12:33
Not as bad… Yeah. Not as bad as what it might seem.

Jilly – Host 12:37
I’m wondering, have you noticed any kind of stigma, the two of you, either you, Dalton, at work when you might mention your wife or Heather, when you’re out and about, has GPP caused other people to stigmatize you in any way or not?

Heather – Guest 12:58
I don’t know if I would say just GPP in general, but I would say chronic illness in and of itself, the way people look at you is definitely different.

Jilly – Host 13:13
Yeah. And Dalton, do you want to add anything to that?

Dalton – Guest 13:17
Sure. I don’t feel like we’ve caught stigma over it socially. I think it’s more or less they just don’t understand, hey, why they didn’t show up to the gathering today if it was a bad day, you know?

And then for example, you asked me a question at work, if it’s a bad day and we got a lot going on, and I’ll have to take the day off, call in and say, “Hey, I’m not going to be there today,” and take care of the family, they don’t stigmatize that, so to speak. When they ask a question like, “Hey, what’d you do yesterday?” I say, “Well, I had to take my wife to the doctor.” But if they want to learn more about it, then I tell them some more stuff.

Jilly – Host 14:02
Sure. Now, you mentioned doctors there, and I’m just wondering what kind of a relationship, Heather, you have with your doctor?

Heather – Guest 14:10
So I have multiple, multiple, multiple doctors, but my dermatologist, I have a good relationship with him. I have rotated through many to get to the right team over time. And it has taken a lot of years to get to the team that I have because with GPP, you end up needing not just a dermatologist. When it starts to affect so many different organs in your body.

Jilly – Host 14:42
Okay. Well, thank you, both of you. Thank you very much. We’ve spoken about a lot of topics today. We’ve really delved into some very deep stuff. I’m just wondering, as we come to a close, if there are any other insights you would like to share with somebody living with GPP, because you’ve both got so much experience. What would you like to tell others? What insights do you have?

Heather – Guest 15:09
Find your people. Find your support groups. Don’t give up hope.

Jilly – Host 15:16
Dalton?

Dalton – Guest 15:17
I would say just listen to your partner who is experiencing GPP and going through that struggle. A lot of people are quick to discount a illness because from the outside, sometimes when it’s not a flare-up, you look fine. There’s nothing wrong with you. But listen, try to understand, empathize, and just be there to support. Let them know we’re in this together and I’ll do whatever I can to help you.

Jilly – Host 15:47
Well, thank you both so much for sharing your knowledge, your experiences with us. It’s been enormously helpful. Thank you.

Dalton – Guest 15:56
Thank you.

Heather – Guest 15:57
Thank you.

Jilly – Host 15:59
Thank you for joining us on Getting Clear on Psoriasis. We hope this episode helps people with GPP improve their overall quality of life and wellbeing. If you like what you’ve heard, be sure to rate our podcast, write a positive review, and spread the word by sharing with your family and friends. It’ll help more people like you find us. If you have any questions, thoughts, or suggestions for us, you can send us an email at podcast@ghlf.org.

16:33
This podcast was produced on behalf of Boehringer Ingelheim and distributed by the Global Healthy Living Foundation. Please visit the Boehringer Ingelheim GPP patient website for more information.

Narrator 16:45
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

×

You’ve Been Diagnosed with Psoriasis: Now What?

“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”

Music full then fade under

Teaser soundbite (Tami Seretti): It’s not your fault. You didn’t do anything wrong, you didn’t ask for this. It’s not because you didn’t bathe. It’s not because you didn’t use the right soap. It’s not because you used the wrong shampoo. It’s not because you ate the wrong food. You have an autoimmune disease.

David Brandt: Hello, and welcome to Getting Clear on Psoriasis. I’m your host, David Brandt, and I’ve been living with psoriasis for more than 30 years. In this podcast series, we bring you stories about different people’s experiences with psoriasis, and hear from medical professionals who treat the condition every day. Our goal is to share information to help you manage your psoriasis, seek out the best treatment options, and live a more full and productive life.

Disclaimer: This podcast is for general information purposes only and should not be substituted for medical advice. Please consult your own medical professionals with any questions regarding a medical condition, advice, diagnosis, or treatment.

Music full then fade out

Brandt: So I’ll give psoriasis one thing – it’s persistent. It first showed up as a documented medical condition around 400 BC. Psoriasis affects around 8 million people in the US … 125 million people worldwide. And yet, a surprising number of folks still view it as some sort of skin rash, something you treat by rubbing a cream onto your skin for a few days.

But what most people don’t understand – unless, of course, they have psoriasis – is that it can be a lifelong condition that often causes a lot of misery – both physically and emotionally. Psoriasis is hereditary. It can lie dormant for years and then awaken out of the blue, producing scaly patches or rashes pretty much anywhere on your body.

Seretti: I was at a Christmas party and my scalp was itchy. I felt a big scaly patch on the back of my scalp.

Brandt: That’s 54-year-old Tami Seretti. She was diagnosed with psoriasis in 1996, and with psoriatic arthritis in 2008.

Seretti: Because it was Christmastime, I couldn’t get into a doctor. And by the time I could see a doctor, between Christmas and New Year’s, like 75% of my scalp was covered with this, and he diagnosed it as psoriasis, which I had never even heard of before. I had no idea what it was. And we kind of went from there.

Brandt: Currently, there are three main ways to treat psoriasis. For milder cases, there are a number of different topical ointments and creams. Another method is called photo-therapy. This is usually done in a dermatologist’s office using a lightbox — sort of like a tanning bed — to slow down the excess growth of skin cells. Then there are targeted medications — administered orally or through injection — that go after the root cause of psoriasis: an overactive immune system.

Seretti: I spent years just doing topicals and everything that he started, and that was in December of 1996. But he didn’t tell me that when all of those scales started coming out, that my hair would come out with it because they were all stuck together. I had short hair, but I went from this short hair to what looked like almost like dreadlocks because it all tangled together.

Brandt: Tami’s doctor had started her on a peanut oil steroid lotion.

Seretti: And I couldn’t get the peanut oil out. My hair kept coming with it. It was really a devastating experience.

Brandt: After developing psoriatic arthritis, Tami started seeing a rheumatologist, who put her on steroids and methotrexate.

Seretti: And that didn’t work. So she switched me over to biologics. My first biologic didn’t work. My second one, I was on it for a long time thinking that it worked. It didn’t work for my psoriasis. But I was thinking that it was helping my joints. But it really wasn’t, because I ended up with a lot of joint damage. I just didn’t realize that it wasn’t working as well as I thought it was. I had to have surgery and had to go off it for two weeks. And when I started again, it didn’t work at all, which is very common.

Brandt: Tami says after all that, it was tempting to blame herself for having psoriasis in the first place. But she’s come to reject that attitude.

Seretti: Number one, it’s not your fault. You didn’t do anything wrong, you didn’t ask for this. It’s not because you didn’t bathe. It’s not because you didn’t use the right soap. It’s not because you used the wrong shampoo. It’s not because you ate the wrong food. You have an autoimmune disease. The soaps you use, the lotions, the foods you eat can have an impact. But it was always there.

Brandt: Dr. Ahmad Shatil Amin shares Tami Seretti’s perspective. He’s an Assistant Professor at Northwestern University, and has been a practicing dermatologist for 9 years.

Amin: One of the first questions that someone asks when they first get diagnosed with psoriasis, and it first appears on their skin is, you know, they want to know, why the heck did this show up, they’ve never had psoriasis, they’ve lived two decades of their life without psoriasis, and all of a sudden that shows up. And so their main question is, why do I have psoriasis? Is it something that I did? Is it something in my diet? And so, the first thing to explain to patients really is that although we don’t understand all the genes that cause psoriasis, it really is a genetic condition. And so you’re either born with these genes, or you inherit these genes from some of your family members. And oftentimes, these genes are very silent and dormant, but they can activate and turn on and cause psoriasis at any point in life. So I try to make the emphasis that it’s nothing that you did, a lot of this was probably out of your control, and your psoriasis kind of decided to show up whenever it wanted to show up.

Brandt: Dr. Amin also tries to explain to his patients that psoriasis is generally a condition that’s going to be with them for some time.

Amin: Oftentimes for most patients, psoriasis is a chronic disease. So in other words, I can’t give you a magic pill and make it go away and make it stay away forever. If you have psoriasis, for most patients, psoriasis kind of sticks with you for several years, maybe for the rest of your life. It sometimes does have a waxing and waning nature. In other words, like it may not be as bad that it is today, a month from now or three months from now. So it might get a little better with time and it might worsen again with time so sometimes the condition can ebb and flow.

Music fades up for :03 – :04, then under

Brandt: 51-year-old Vickie Wilkerson lives in Shreveport, Louisiana. She was first diagnosed with psoriasis about 18 years ago. In Vicky’s experience, some doctors were better than others at communicating with her about her psoriasis.

Wilkerson: I wish I had been more informed. I wish the doctors gave me information, or told me where I can find information, or be more informed because I didn’t know anything. And what little bit I did learn was of my own research online. So had no idea, I really had no idea. I did not know how bad the psoriasis could get. I did not know that there were other conditions that could come along with having the psoriasis. I was just in the dark.

Brandt: Vicky says as her psoriasis worsened, so did her emotional state. And it eventually began to affect her marriage.

Wilkerson: After I was on my first biologic, I put so much faith into it, that it was gonna work, it was gonna clear it up. And, and when it didn’t six months later, and I had to stop using that biologic. It really kind of threw me into a tailspin. I got really depressed. Even so much so that I’d only been married about a year at that point, I told my husband, I would let him out, I would give him a divorce. And, you know, and let him walk away, because I didn’t know how bad it was going to get. I didn’t know how much it was going to affect, you know, affect my life going forward. And lucky for me, he is great man. And he stood by me, and he’s like, I’m not letting you go.

Brandt: Many couples aren’t as lucky as Vicky and her husband, and relationships sometimes end due to one person’s battle with psoriasis, and the other’s inability to cope with it.

Music fades up for :03 – :04, then under

Brandt: So far, we’ve been talking about psoriasis mainly as a skin disease. But according to Dr. Mona Gohara, Associate Professor of Dermatology at Yale School of Medicine, it’s a more complex condition.

Gohara: It also can be associated with arthritis of the small joints or lower back. And we know now that it can be associated with increased risk of coronary artery disease, elevated cholesterol, and even elevated blood sugars are what we call it the metabolic syndrome. Gone are the days when somebody comes in the office and we just give them a cream and have them walk out the door when they have psoriasis. It really is now counseling them about not only what to do with their skin, but what they can do and what they should be looking out for in terms of arthritis prevention or treatment, and also being in tune of their cardiovascular risk factors and getting cardiovascular exams.

Brandt: And many doctors have come to realize the importance of validating their patients’ experiences and feelings. Dr. Joel Gelfand is a Professor of Dermatology and Epidemiology at the University of Pennsylvania.

Gelfand: It’s really important for the clinician to understand the patient’s perspective, how the disease is impacting them personally, in terms of the physical symptoms they have, is it disrupting their sleep, is the effects of psoriasis causing staining of their clothes, clothing, or their bedsheets, and things of that nature. Are they itching all night long? As well as the emotional impacts of psoriasis. Does it affect their personal relationships, their intimate relationships, do they feel anxious or depressed about their disease, does it affect their ability to work? By having an insight into the degree of physical and emotional symptoms people have related to psoriasis, that gives us a sense of how aggressive we need to be in managing the disease.

Brandt: And on the patient side, Tami Seretti has begun to rely more and more on her own inner strength to manage her psoriasis.

Seretti: You’re going to find your new self and be so much stronger for it because you’re already stronger than you think. You have it. You got out of bed this morning, you reached out to somebody, you’re already stronger than you think you’re already on your way. And hiding it doesn’t hide it at all. It just makes you look like a flake. Instead of your skin looking like a flake.

Brandt: 63-year-old Diane Talbert from Waldorf, Maryland agrees. She’s become very proactive about her psoriasis, making yearly trips to Capitol Hill to advocate for people like herself, and she’s also spoken before the FDA.

Talbert: You need to go advocate for yourself. So that’s something else. I would stop the hiding, definitely. And look for a great doctor, you know, and, and I guess, do more research because I didn’t know, I didn’t know we had great doctors out there at all.

Brandt: Dr. Joel Gelfand encourages all his patients to stay positive, and be their own best advocates.

Gelfand: I feel like people with psoriasis have a unique type of courage. It takes a lot of courage to face our world with a skin disease like psoriasis. And it takes a lot of persistence and effort to get to the right treatment plan that’s helpful for the patient. With that in mind, I really encourage my patients to stick to it. That courage, that bravery in the face of frustration and setbacks, pushing forward and, and getting the answers you need, trying treatments to see which one is going to work for you properly. These are the secrets of success for my patients.

Music fades up under final narration

Brandt: In the next episode of ‘Getting Clear on Psoriasis,’ we talk about the challenges of navigating daily life with psoriasis.

Teaser Soundbite (Vickie Wilkerson): It took me from a very confident person, because I was very confident in who I was at the time, down to someone who was fearful, ashamed. Definitely ashamed because I mean, my skin just looked horrible.

Brandt: That’s coming up on Getting Clear on Psoriasis. If you like what you heard, head over to Apple Podcasts and leave a 5-star rating and write a positive review. It’ll help spread the word to more people who might be in need of support. And if you know of someone living with psoriasis, be sure to tell them about this podcast. As always, we welcome your feedback, so send us an email to Psoriasis@GHLF.org.

Until next time, I’m David Brandt. Thanks so much for listening.

Sponsor Credit: This podcast is made possible with support from Walgreens and AllianceRx Walgreens Prime, sponsors of the Global Healthy Living Foundation.

“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”

×

Living with Psoriasis

“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”

Music full then fade under

Teaser Soundbite (Vickie Wilkerson): It took me from a very confident person, because I was very confident in who I was at the time, down to someone who was fearful, ashamed. Definitely ashamed because I mean, my skin just looked horrible.

David Brandt: Hello, and welcome to Getting Clear on Psoriasis. I’m your host, David Brandt, and I’ve been living with psoriasis for more than 30 years. In this podcast series, we bring you stories about different people’s experiences with psoriasis, and hear from medical professionals who treat the condition every day. Our goal is to offer tools and resources to help you manage your psoriasis, seek out the best treatment options, and live a more full and productive life.

Disclaimer: This podcast is for general information purposes only and should not be substituted for medical advice. Please consult your own medical professionals with any questions regarding a medical condition, advice, diagnosis, or treatment.

Music full then fade out

Brandt: Back in the early 60s, there was an advertising campaign for a medicated shampoo designed to relieve something called “the heartbreak of psoriasis.” That campaign was a little over the top to say the least, and it generated a fair amount of ridicule. But despite the melodramatic Madison Avenue spin, I think what those ads were playing on was the sense of shame that goes along with having a visibly unattractive skin condition.

Withem-Voss: I was in line at a zoo — a local zoo here in Chicago — and I had a lady turned around and looked at me, and was offended by my legs being affected, and actually asked if my sores were something that were contagious, and why was I not covered up?

Brandt: That’s Melissa Withem-Voss from Waukegen, Illinois.

Withem-Voss: I very calmly told her that I had psoriasis. I told her that there was no more reason for me to be covered on a 95-degree day than her. I explained to her that it was a condition that was non-contagious. But I could still see in her face that she didn’t believe me. She had absolutely no qualms with stepping away from me at that point. And this was way before COVID and things, so there was no immediate knowledge of you know, ‘Ew get away.’

Brandt: I think one of the most common themes among those of us who have psoriasis is that we want to do anything we can to cover it up. And let’s face it: Appearance-wise, psoriasis can be jarring. It can cause people to recoil, thinking it has to be contagious — something to be avoided at all costs. And people who have that reaction often are not very receptive to learning what psoriasis actually is. But for people who live with the condition, being judged — like Melissa was — can be frustrating, unnerving, even traumatizing.

Withem-Voss: People need to be aware that it’s not uncommon to have darker thoughts, along with psoriasis, because you feel like you hit a rock bottom. And I believe that most psoriasis sufferers feel that way that you feel you’ve come to a point where you can’t really see out or up. And it’s usually around the time frame, that you’ve been diagnosed for a little bit. And you’ve tried a couple things and maybe failed them, you start to feel kind of a depression of, okay, where do I go from here? What’s next? And then you start looking at it, and you’re like, ‘Is there anything left is, am I doomed? Is this it?’

Brandt: Melissa says when people reach that point, it’s time to seek help: from a health care provider, a support group, a counselor.

Withem-Voss: It’s not a journey for the faint of heart. You have to really look after yourself, and all the different ways.

Music up for :03 – :04, then under

Brandt: I’ve been very fortunate that my psoriasis is relatively mild. It’s mostly visible on my hands. I’m the catering director at a large hotel in Los Angeles, so I’m very conscious of needing to stay after my psoriasis every day. But for people with more severe cases, psoriasis flareups can cause painful red rashes on the skin. The skin often cracks and bleeds in different areas of the body. 79-year-old John Latella knows this all too well.

Latella: It’s been difficult at times. I’ve suffered with depression that I had to take myself out of. It was painful at times. It was bloody at times. It was just sometimes you just say I give up. But then you keep going.

There would be times when the pain of the burn so much that I’d be in tears. You know, you get at the point, you say to yourself, ‘I just can’t take it anymore.’ Then you have to relax. You have to just say I have to move forward. My children all knew what I was going through. They knew that I just couldn’t do some things. But I never stopped doing the things that I wanted to do. Even though it might have been very painful. I added on a room to our house, up and down a ladder. At the end of the day, it was very painful. I knew I had to do things I had to prove to myself.

Brandt: So what’s actually happening here? What’s causing all the rashes, the itching, and the pain for so many patients like John? We talked to Dr. Ahmad Shatil Amin, who’s an Assistant Professor at Northwestern University and a practicing dermatologist for nine years.

Amin: Psoriasis produces these thick plaques on the skin, and basically what you have is a lot of sort of dead skin kind of piling up on one another. And so that produces that kind of scale. So oftentimes, patients who have psoriasis leave a trail of scale behind. Their bedrooms, their offices are often covered in scale, their desks are covered in scale, whenever they take off their shirt, there’s like a plume of scale everywhere, when they have it on their scalp, they have scaling on their shoulders. A lot of patients with psoriasis will describe that their plaques are quite painful, especially patients who have psoriasis on their hands and feet. You’ll hear stories about how a young person with psoriasis has completely stopped dating, because they’re just afraid to be close to someone, or they’re afraid to experience physical intimacy with anyone because of their plaques. You will hear stories about how patients have stopped going to the gym, because they don’t want to be on a treadmill in their shorts and have someone else stare at their psoriasis on their legs.

Brandt: 51-year-old Vickie Wilkerson from Louisiana says self-consciousness about her psoriasis was devastating.

Wilkerson: It just took me from a very confident person, because I was very confident in who I was at the time, down to someone who was fearful, ashamed. Definitely ashamed because I mean, my skin just looked horrible. To someone that was, you know, an outdoor-type person to hiding in my house and not really wanting to go outside. You know, I didn’t want anybody to see what I look like.

Brandt: Tami Seretti, who lives near Pittsburgh, describes her own self-isolation.

Seretti: I did lose some friends by canceling plans and being dubbed as unreliable. When really it was me not being completely honest, because I just didn’t want to say I can’t put my underwear on. I can’t, I can’t put my bra on. I can’t wear my pants. That’s why I’m canceling. So I would just say, you know, I’m not feeling well, or something came up. I think so many things came up that I did lose some of my friends along the way.

Brandt: But Tami also recalls that one of the most visible side effects of her psoriasis ultimately helped her to connect with others on a positive level.

Seretti: I went 20 years without knowing one person that had psoriasis and then finally, losing my hair and people were like, what happened to your hair? Well, it’s psoriasis. And people that I’ve known since middle school were like, ‘You know, I have that too. I’ve been hiding it all my life.’ And what a waste. You know, we could have all supported each other through this, but none of us knew. Because we were all hiding it.

Brandt: And Vickie Wilkerson says that, after 18 years, she’s grown more confident using a direct approach with people, instead of always hiding in the shadows.

Wilkerson: Now if somebody comments and they say something, I just flat tell them, ‘Look, it’s psoriasis. And first and foremost, it’s not contagious, you cannot catch it. It’s hereditary on my part.’ So I just come and go into telling them and trying to educate them about psoriasis. So that maybe somewhere down the line, if they see it again, they’re not going to give the other person the same reaction they gave to me.

Brandt: So Vickie Wilkerson has developed a new self-confidence in educating people about psoriasis. And Tami Seretti found support from people who she may not have thought would be supportive. Another psoriasis patient we spoke to is Catherine O’Leary. She also happens to be a clinical psychologist in the UK, and works with people who live with various chronic illnesses. For her, it’s also important to seek out the things that bring comfort.

O’Leary: When you’re struggling with psoriasis, the things that you do to look after yourself often go out the window. As psychologists, we talk about soothing activities are the things that soothe you, they’re the first things to go when you’re in distress, when your psoriasis is bad. So make sure that you practice self-care things and that and that might be you know, walk on the beach, or meditating, it might be curling up with a good book, but the things that just make you feel calm, make you feel relaxed, and make you feel soothed.

Brandt: Dr. Mona Gohara is a dermatologist from New Haven, Connecticut. She says some patients feel judged because of their psoriasis, and may be reluctant to tell their doctor about related conditions they’re experiencing.

Gohara: It’s important to be transparent, because it really can make a difference in treatment. So I think; one, talking about what other symptoms you’re having: arthritis, is there a cardiovascular history; two, talking about how this is affecting your life; and three, to be just honest. It doesn’t faze me what people tell me in the office. I’m not judging you. I just wanna know factual information, so we can come up with the safest and best treatment plan.

Music fades up under final narration

Brandt: Straight talk with your doctor is so important. It’s also crucial that psoriasis patients feel comfortable with the medical professionals they work with to address their condition. And that’s what we’ll focus on in the next episode of ‘Getting Clear on Psoriasis’ – building the right care team to treat your psoriasis.

Teaser Soundbite (Tami Seretti): I had to do a lot of legwork on my own to get that team. I’ve been through a lot of doctors, a lot of dermatologists, a lot of specialists, a lot of people that were like you know, it’s all in your head. And you gotta let that go. You got to you got to drop that and find somebody who knows that it’s not in your head.

Brandt: That’s coming up on Getting Clear on Psoriasis. If you like what you heard, head over to Apple Podcasts and leave a 5-star rating and write a positive review. It’ll help spread the word to more people who might be in need of support. And if you know of someone living with psoriasis, be sure to tell them about this podcast. As always, we welcome your feedback, so send us an email to Psoriasis@GHLF.org.

Until next time, I’m David Brandt. Thanks so much for listening.

Sponsor Credit: This podcast is made possible with support from Walgreens and AllianceRx Walgreens Prime, sponsors of the Global Healthy Living Foundation.

“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”

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Building Your Psoriasis Care Team

“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”

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Teaser Soundbite (Tami Seretti): I had to do a lot of legwork on my own to get to that team. I’ve been through a lot of doctors, a lot of dermatologists, a lot of specialists, a lot of people that were like you know, it’s all in your head. And you gotta let that go. You got to you got to drop that and find somebody who knows that it’s not in your head.

David Brandt: Hello, and welcome to Getting Clear on Psoriasis. I’m your host, David Brandt, and I’ve been living with psoriasis for more than 30 years. In this podcast series, we bring you stories about different people’s experiences with psoriasis, and hear from medical professionals who treat the condition every day. Our goal is to offer tools and resources to help you manage your psoriasis, seek out the best treatment options, and live a more full and productive life.

Disclaimer: This podcast is for general information purposes only and should not be substituted for medical advice. Please consult your own medical professionals with any questions regarding a medical condition, advice, diagnosis, or treatment.

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Brandt: So far, we’ve talked about what psoriasis is, and how it can affect daily life. But there’s a bigger picture. 5 to 30 percent of psoriasis patients eventually develop psoriatic arthritis. This is a form of arthritis that affects some people with psoriasis, and can cause joint pain, stiffness and swelling. What’s more, psoriasis can occur with related conditions, or comorbidities — things like diabetes or cardiovascular disease. And a patient’s mental health may begin to suffer as well. So psoriasis patients often need a coordinated team of medical professionals.

Withem-Voss: My rheumatologist does my arthritis. My dermatologist does my skin and everything related to it. And my PCP handles most of my comorbidities.

Brandt: Melissa Withem-Voss is a professional chef who lives in Waukegan, Illinois. She’s lived with psoriasis and several related conditions for a number of years.

Withem-Voss: That is one thing that is so very common with psoriasis, because things tend to go hand in hand with it. So for instance, I’m a diabetic. And that’s kind of common. It’s usually more frequent for people to be overweight with psoriasis because we’re not as active in as many ways as we once were. So there tends to be kind of a melting pot of different physicians being involved.

Brandt: And it’s crucial that those physicians — the ones in the “melting pot” — are communicating with each other about a patient’s treatment plan. It’s also important that they make the patient feel heard about what they’re going through. Tami Seretti discovered that finding the right doctors sometimes involves trial and error.

Seretti: I had to do a lot of legwork on my own to get that team. I’ve been through a lot of doctors, a lot of dermatologists, a lot of specialists, a lot of people that were like you know, it’s all in your head. And you gotta let that go. You got to you got to drop that and find somebody who knows that it’s not in your head.

Brandt: A good team of doctors will work together to come up with the best care plan. Dermatologist Dr. Mona Gohara says that in her practice, there’s a range of expertise in different areas. And this comes into play especially for more severe cases.

Gohara: I’m in a really big group of dermatologists. And even amongst us, there’s a broad range of what people are comfortable doing. So, you may come into the same office and get different doctors with different levels of comfort and expertise. So it’s not necessarily that somebody has to be like a psoriasis expert, because psoriasis is a pretty common skin condition that most dermatologists are very proficient in treating. The bigger discrepancy comes from whether somebody is comfortable prescribing a biologic.

Brandt: Biologics, you may remember, are targeted medications that can be used for moderate to severe psoriasis as well as psoriatic arthritis. Dr. Gohara says it’s vital that every member of a patient’s care team is communicating with one another.

Gohara: In the case of somebody who has psoriatic arthritis, oftentimes he or she is seeing a rheumatologist as well. And I’m not operating in a vacuum. I’m speaking with the rheumatologist to understand their recommendations so we can come together and identify what is going to best treat both arthritis and skin because there are some biologics that are really great for skin but not so great for arthritis and there are some biologics that are really great for arthritis, not so great for skin, then there are some that are both. And so in those situations, we obviously want to converge on the ones that are good for both.

And then I always recommend that they are seeing their primary doctor for regular cholesterol checks. And then the primary doctor will appropriately recommend seeing a cardiologist if she or he thinks that they have other cardiovascular risk factors that warrant additional treatment.

You should also let the doctor know to what extent this is affecting your life? Is it just a spot that’s annoying on your skin? Or are you not going out? Are you not raising your hand? Are you’re not applying for the job? Are you not dating? That’s something that’s important.

Brandt: Speaking up to a doctor can help a patient understand whether they may be experiencing depression as a result of their psoriasis. Catherine O’Leary is a clinical psychologist in the U.K. She also has psoriasis.

O’Leary: There are very many people with psoriasis who are very happy, very well-functioning, and leading great lives.

The thing to remember is that depression and anxiety are both very, very common, and especially so in people with psoriasis, because it’s a difficult condition to live with. And the other thing to remember that it’s not their fault, it’s not because they’re weak, it’s a really hard condition to live with. It’s not because they’re doing something wrong. It’s because they’ve got psoriasis, and it’s a challenge is really, really hard. But the depression adds to it, and just makes it all that much harder. And I think once you get into the vicious spiral, it’s quite hard to get yourself out of it. But the thing to know is that depression is very treatable. It’s treatable with anti-depressants, and it’s also treatable with talking therapies. So once people identify that they’re feeling depressed, that they’re feeling anxious, the important thing is to go and see their medical specialist and ask for whatever support is available in their area.

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Brandt: There’s one other key member of a patient’s care team, and that’s the pharmacist. Some patients with more serious cases may need advanced therapies, like injectable biologics or targeted oral medications. And these prescriptions cannot be filled at a regular corner pharmacy.

Amin: After the medication is approved, patients have to interact with a specialty pharmacy to arrange for shipment of the medicine to their home. And they often have to do that on a regular basis.

Brandt: That’s Dr. Ahmad Shatil Amin, who’s been a dermatologist for nine years.

Amin: And these specialty pharmacies are you know, I think they’re excellent. They’re staffed by very, very well-trained pharmacists who really understand these medicines very well, and they’re really our partners, and helping us give these medicines safely to patients and to educate our patients about the medicine and the dosing and the frequency.

Brandt: Renee Baiano knows this first-hand. She now works as Clinical Program Manager at AllianceRx Walgreens Prime, and she also spent time as a staff pharmacist at Walgreen’s Specialty Pharmacy. She says there are several different reasons a drug would be considered a specialty medication versus one you can get at regular retail pharmacy.

Baiano: First of all, specialty medications are typically FDA-approved to treat complex medical conditions and rare diseases which require additional monitoring, and extra patient education. Specialty medications often require special storage, such as refrigeration or even frozen medications. They often require certain preparations such as sending certain supplies to the patient. And they also require special handling sometimes, so the specialty pharmacy is well equipped to get the patient’s medication out properly.

Brandt: And she says specialty medications can be very expensive. Specialty pharmacies can work with patients and their providers to help facilitate insurance coverage and locate financial assistance. Renee says specialty pharmacists are also trained to maintain regular contact with the patient.

Baiano: Your pharmacist will be checking in with you regularly to ask you certain questions to make sure you are doing well on therapy. So they may be asking if you’re having any side effects so that you can discuss what to do about those. They may be asking how you’re doing with taking your medication as prescribed, so that they could help guide you through ways to make sure you’re taking your medication properly. And they may be checking in to see how you’re doing in general in therapy to make sure that the medication is working effectively for you.

Brandt: And Renee says the specialty pharmacist should stay on top of things to help people stick with their treatment plans.

Baiano: Another concern that we see from a lot of patients starting systemic therapies is that when they start to feel better, they think they can start skipping or holding doses. So it’s really important that the pharmacist watches the patient to make sure they’re not late to refill their medication or not expressing that they’re missing doses, so that we can educate them on the importance of taking their medication as prescribed to avoid things like worsening symptoms or other complications.

Brandt: Psoriasis patient Tami Seretti says most of her medications come through a specialty pharmacy. And she appreciates that they do much more than just fill prescriptions.

Seretti: They do make a pharmacist available for everything, for any questions that you have, or any side effects that you have or anything like that. And also the companies that manufacture the biologics and the medications, also have nurses available and help lines and support lines and support programs. For as long as you’re taking the medicine, they’ll give you 24-hour nurse lines, they’ll give you 24-hour pharmacy lines. And it’s important to know, I’ve always asked a pharmacist, my dermatologist, we’ve always discussed the possible side effects.

Brandt: So, we’ve looked at the importance of putting together a solid care team to manage your psoriasis. And the critical role specialty pharmacies play in the equation. But even with the most well-oiled care team , and the most competent specialty pharmacy, psoriasis patients still face an uphill battle to get insurance companies to cover their treatments. Dermatologist Dr. Mark Lebwohl shares that frustration.

Lebwohl: Once a patient is prescribed a biologic, the work for the physician does not even come close to ending there. It’s a fight that goes on with your insurance company, because the insurance company, most of the time does not want to give the patient the drug. And if and when we fight, the fight usually takes at least an hour. It takes about two weeks to get this done. The patient is then prescribed the medication.

Brandt: At least, that’s how it works, some of the time. But insurance obstacles can vary widely from case to case when it comes to getting costly medications covered. Some people have to fight for weeks or months, and still get denied. Still, Tami Seretti says not to be put off by all the hoops the insurance companies make you jump through.

Seretti: Learn your insurance companies, because if you have to take a specialty medicine, it can be very discouraging. You’re going to go through prior authorizations. And you’re going to go through step therapy, and you’re going to go through everything in the world because stuff is expensive, and nobody really wants to pay for it. Don’t give up, your doctor will help you. Organizations will help you. There are people out there that will help you get medication that you need and help you cut through a red tape.

Music fades up under final narration

Brandt: In the next episode of Getting Clear on Psoriasis, we explore what treatment options are available for psoriasis, and how to tell if you’re getting the treatment you need.

Teaser Soundbite (Withem-Voss): Most medications for psoriasis, once you start them, whether they be topical or biologic, they will work for an undetermined amount of time, it just seems to be whatever your body accepts it is. And then suddenly, you’ll start noticing either a breakthrough, or it feels like it stopped working completely, just all of a sudden.

Brandt: That’s coming up on Getting Clear on Psoriasis. If you like what you heard, head over to Apple Podcasts and leave a 5-star rating and write a positive review. It’ll help spread the word to more people who might be in need of support. And if you know of someone living with psoriasis, be sure to tell them about this podcast. As always, we welcome your feedback, so send us an email to Psoriasis@GHLF.org.

Until next time, I’m David Brandt. Thanks so much for listening.

Sponsor Credit: This podcast is made possible with support from Walgreens and AllianceRx Walgreens Prime, sponsors of the Global Healthy Living Foundation.

“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.

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Is Your Treatment Working?

“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”

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Teaser Soundbite (Withem-Voss): Most medications for psoriasis, once you start them, whether they be topical or biologic, they will work for an undetermined amount of time, it just seems to be whatever your body accepts it is. And then suddenly, you’ll start noticing either a breakthrough, or it feels like it stopped working completely, just all of a sudden.

Brandt: Hello, and welcome to Getting Clear on Psoriasis. I’m your host, David Brandt, and I’ve been living with psoriasis for more than 30 years. In this podcast series, we bring you stories about different people’s experiences with psoriasis, and hear from medical professionals who treat the condition every day. Our goal is to offer tools and resources to help you manage your psoriasis, seek out the best treatment options, and live a more full and productive life.

Disclaimer: This podcast is for general information purposes only and should not be substituted for medical advice. Please consult your own medical professionals with any questions regarding a medical condition, advice, diagnosis, or treatment.

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Brandt: I grew up working on a horse farm. Around 2001, I started to notice scaling around a small area on my right arm. I went to several doctors in Florida, where I was living at the time. They thought the bruises on my skin were caused by an allergy related to hay, straw, or grain. I mean, working on a horse farm…makes sense, right? The fourth doctor I saw finally got it right: what I had was psoriasis. My experience is the same for many others who bounce around from doctor to doctor, searching for one who can properly diagnose the condition, and treat it with the right medications. And for people like Tami Seretti, that means a lot of different prescriptions.

Seretti: I was never prescribed a biologic until I was diagnosed with psoriatic arthritis in 2008. Up until then, it was all topicals lotions and creams and shampoos and more lotions and more creams and steroids and non-steroids and stuff that I could use on my eyelids, and stuff I could use on my feet and my elbows, and then different stuff I could use on my scalp. So I had like a whole medicine cabinet full of prescriptions, and it would take an hour to get them all on.

Brandt: Dermatologist Dr. Mona Gohara describes what she calls a “therapeutic treatment ladder” for psoriasis.

Gohara: At the bottom of the therapeutic ladder are topical ointments and creams. These generally fall in the category of topical steroids. Steroids have different strengths, and so we offer different strengths based on body location to help decrease the inflammation. There are also vitamin D derivatives that we can use in a cream form, and different vitamin A derivatives, all of which in their cream or ointment form can be helpful in the treatment of psoriasis. So the first thing is topical medication.

Brandt: The next rung on the treatment ladder is phototherapy.

Gohara: When somebody has psoriasis, it’s a very effective way to treat it is to put them in a light box in our offices. This is a controlled setting of ultraviolet light therapy and narrow band of ultraviolet light therapy to help to reduce the inflammation and actually often put people in remission for periods of time.

Brandt: Then comes the heavy artillery – the targeted medications, which include oral pills and injectable biologics.

Gohara: And they’re kind of like the tippy-top of the psoriatic treatment ladder. Psoriasis is an immune-mediated condition that’s coming from our immune system and the interaction of different players within our immune system. And these biologics actually work at the level of the immune system to block those interactions. These can be incredibly effective and can really transform somebody’s life. These medications can be a game changer.

Brandt: But it’s important to have realistic expectations about timing. As dermatologist Dr. Joel Gelfand says, these medications don’t produce results right away.

Gelfand: Most of our treatments can take some time to work, especially seeing a full benefit from treatment. So patients should expect that we’ll need to wait about four to eight weeks to have a starting response, but sometimes as much as four to six months to see an optimal response to treatment.

Brandt: And the waiting game can be discouraging, as psoriasis patient Vickie Wilkerson discovered.

Wilkerson: I didn’t know anything about biologics at the time. I really didn’t know anything about the drugs, and I’m like, oh, this is gonna work. I mean, it’s just gonna work, it’s gonna clear me and I’m gonna be good to go. And it made it harder on me when it failed, when it did not work. And it sent me on, like a little downward spiral.

Brandt: Melissa Withem-Voss is a professional chef from Waukegan, Illinois. She says most patients try to be upbeat about a new medication, and want to believe it’s going to help them.

Withem-Voss: You want to give it as much positive vibes as you can. But at the same token, it’s kind of stuck in the back of your head of, ‘when is this gonna quit?’ And you usually tend to plan a plan B with your physicians. Like, okay, once this drug doesn’t do what it’s doing now, what are we going to do then? So you sort of have like, like an A and a B plan.

Most medications for psoriasis, once you start them, whether they be topical or biologic, they will work for an undetermined amount of time, it just seems to be whatever your body accepts it is. And then suddenly, you’ll start noticing either breakthrough, or it feels like it stopped working completely, just all of a sudden.

Brandt: That’s usually when it’s time to change things up, says dermatologist Dr. Mark Lebwohl.

Lebwohl: If someone has extensive psoriasis, meaning more than 10%, body surface area, topical therapies start to become impractical. If they have psoriasis, that simply is refractory to topical therapies, or involves area of the body that that are problematic, such as the hands and feet, where the psoriasis can be very painful, can interfere with day to day, functions of life. Or if it involves the face, for example, or severely involves a scalp. Those are areas where I would say, you know, we’ve got to get you in control, got to use treatments that work quickly. And this makes you a candidate for systemic therapy and for biologic therapy.

Brandt: Dr. Lebwohl says that psoriasis can often lead to psoriatic arthritis. And that’s something your doctor needs to know about.

Lebwohl: Many of them, by the way, won’t even tell you about joint pains. And that’s a critical question which I asked every patient when I first see them, because if they have psoriatic arthritis, it has a big impact on the treatment I’m going to give them.

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Brandt: My psoriasis started on my right arm and stayed there for years. But then I started noticing extreme flaking on my scalp — and it eventually showed up under my fingernails. So that’s another tricky aspect of psoriasis — it doesn’t always stay in one place. It can be a moving target, showing up in sensitive places like under the arms or in the genital area. And as we heard from Dr. Joel Gelfand, patients may see positive results on a certain medication, but their quality of life can continue to suffer.

Gelfand: Some patients may have, say, a 70 percent reduction in their body surface area, and flaking of psoriasis. And they may be delighted with that. And they’re happy and they feel like they have no more symptoms of psoriasis that are bothersome, they feel like they go about living a normal life, well, then we could probably stay on that course of treatment. But if the patient feels like they’re still bothered by their disease, they still think about it a lot, they’re still embarrassed by it or they have to alter their activities, they don’t want to go swimming or get their hair cut, then we should think about using something that’s going to be more effective with achieving an optimal response.

Brandt: Dr. Gelfand says one of the best things a patient can do for themselves is be proactive. Talk to the doctor. Let them know what’s going on with your psoriasis symptoms, the good and the bad.

Gelfand: I think it’s really important for the patients to advocate for themselves and make sure that clinicians are aware of what’s going on with their physical and emotional health. Because all of us are here doing this work because we want to help people live their best lives and healthiest lives. And so if people feel like they’re struggling emotionally related to their skin disease, we need to know that information. It’s a vital sign for us. And the first thing we’re going to try to do is figure out what do I need to adjust the treatment to get your skin clearer to help with some of the burdens that you’re dealing with?

Brandt: Treating psoriasis with any degree of success involves a partnership between patients and their physicians. That partnership can only work if there’s honest and open communication about a patient’s condition, both the physical and the emotional. Tami Seretti says it’s easy to let frustration and even despair take over, but she’s committed to staying optimistic.

Seretti: Don’t get discouraged. Don’t lose hope, because they’re coming out with more things every day. And they’re learning new things every day. So there’s always going to be something to switch it out for. Unfortunately, it can take a lot of time. It’s worth it in the end.

Music fades up under final narration

Brandt: In the next episode of Getting Clear on Psoriasis, we talk about what happens once your doctor prescribes a biologic to treat your psoriasis.

Teaser Soundbite (Tami Seretti): I had an auto injector. And they said you need to be injecting your thigh. That hurts! And I would sit there in the bathroom. And I would hold that auto-injector on my thigh. And I would be like, Okay, I’m going to do it at the count of 3. 1-2…. And I would be in there for an hour.

Brandt: That’s coming up on Getting Clear on Psoriasis. If you like what you heard, head over to Apple Podcasts and leave a 5-star rating and write a positive review. It’ll help spread the word to more people who might be in need of support. And if you know of someone living with psoriasis, be sure to tell them about this podcast. As always, we welcome your feedback, so send us an email to Psoriasis@GHLF.org.

Until next time, I’m David Brandt. Thanks so much for listening.

Sponsor Credit: This podcast is made possible with support from Walgreens and AllianceRx Walgreens Prime, sponsors of the Global Healthy Living Foundation.

“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”

×

Biologics: What to Expect

“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”

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Teaser Soundbite (Tami Seretti): I had an auto injector. And they said you need to be injecting your thigh. That hurts! And I would sit there in the bathroom. And I would hold that auto-injector on my thigh. And I would be like, Okay, I’m going to do it at the count of 3. 1-2…. And I would be in there for an hour.

Brandt: Hello, and welcome to Getting Clear on Psoriasis. I’m your host, David Brandt, and I’ve been living with psoriasis for more than 30 years. In this podcast series, we bring you stories about different people’s experiences with psoriasis, and hear from medical professionals who treat the condition every day. Our goal is to offer tools and resources to help you manage your psoriasis, seek out the best treatment options, and live a more full and productive life.

Disclaimer: This podcast is for general information purposes only and should not be substituted for medical advice. Please consult your own medical professionals with any questions regarding a medical condition, advice, diagnosis, or treatment.

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Brandt: As we heard in previous episodes, psoriasis can range from mild to severe, and there are treatment options for each type. Doctors try to match the severity of a patient’s condition with the proper treatment. Mild cases are usually treated with topical ointments and creams, but when psoriasis gets worse, dermatologists like Mona Gohara often turn to more complex medications known as biologics. They work on your immune system, tamping down activity to treat the root cause of psoriasis.

Gohara: Some of these medications can be pretty life-changing and miraculous. I’ve seen people go from body surface area of 80 percent to zero. And this can happen within months.

Brandt: But you can’t just run down to the local pharmacy to pick up your prescription. Biologics are administered either at an infusion site, or self-administered via injection by the patient. It’s more involved than swallowing a pill with a glass of water, and can take some getting used to. Self-injection can be very escary or overwhelming at first for patients like Tami Seretti.

Seretti: I had an auto injector and at the time, they were very new. And they said you need to inject in your thigh. That hurts! And I would sit there, I would sit in the bathroom and hold that auto-injector on my thigh. And I would be like, ‘Okay, I’m going to do it at the count of 3. 1… 2 … No, I’m not going to do it this time, I have to wait.’ And I would be in there for an hour just trying to push that button for 10 seconds of a needle that I was terrified of needles. Then I had to go from auto-injectors to syringes. And again, I was terrified. I can’t give myself a shot. Well, as it turns out, I sure can.

Brandt: And it’s not just a ‘one-and-done’ proposition. Biologics need to be taken on a regular, long-term basis. Here’s Dr. Gohara.

Gohara: These can be medications that are injected monthly, every three months, every six months, or sometimes every two weeks. And generally, this is a commitment most of the time for years, if not more. Sometimes it’s at least the minimum a year or two years, so if you really want to get the sustained effect, and sometimes for a lifetime.

Brandt: Another dermatologist, Dr. Joel Gelfand, says despite the apprehension many patients feel about sticking themselves with a needle, they’re relieved and delighted when their skin begins to clear up.

Gelfand: When patients are starting and maybe a little reluctant because they’re worried about doing injection therapy, you know, I think patience is really in order there. I mean, I always let my patients know we have other things to try if you really don’t want to go that that route, if it’s medically appropriate. If they have arthritis, for example, then I may be more pushy, that I think need to try a biologic. Most of my patients are very satisfied when they move on to a biologic therapy. And most of them will say to me, ‘I wish I started years earlier.’ People justifiably are worried about new therapies, or things that are by injection that sound scary to the patients. But in reality, these are really safe and highly effective therapies. And so for me, one of the biggest joys I have as a clinician is working with patients who are struggling with their chronic disease, finally getting them on therapy that’s helpful for them and then seeing the back and follow up and seeing that unique smile they have in their face when they’ve gotten to a point in their life where after years or decades of struggling psoriasis, you know, that skin is clear. It’s like a miracle.

Brandt: Prescriptions for biologics can only be filled by a specialty pharmacy. And they can be become a patient’s ally in their treatment journey.

Gelfand: Specialty pharmacies are often very engaged in helping channel the patient to a therapy that is covered by their insurance, as well as educating the patient about how to use the medication, do the injections, things of that nature.

Having a good relationship with a specialty pharmacist is really helpful to make sure that when things aren’t going exactly to plan, that there’s a way of managing things as well as maintaining access to therapy over time.

Brandt: Dr. Ahmad Shatil Amin says patients usually come into his clinic with a lot of questions about biologics, and whether they’re safe to take.

Amin: I think it does require a very, very careful discussion about how effective these medicines are going to be in clearing their psoriasis, and also some of the risks involved.

These medicines generally are very, very safe. They’ve been very, very thoroughly tested with large, large number of patients who have been in the clinical trials who have been followed over time. We have large studies that have followed patients in regular clinics across the United States, who have been on these medicines for a number of years, that really prove that these medicines overall are quite safe.

Brandt: Dr. Amin says biologics can make the body more prone to infections, so doctors want to know if a patient on a biologic starts to feel sick. This way, they can advise whether the patient should temporarily stop taking the medication while they recover, and when they can re-start it.

Amin: Because if they feel sick, while they’re on one of these medicines, if they have a cold fever, that’s not going away, we definitely want them to hold their medicine to let us know. We don’t want them to restart until they’ve gotten over whatever they have.

Brandt: Patients, understandably, also have concerns about side effects and cost. Here’s Dr. Gelfand again.

Gelfand: We have to go through that with the patient carefully so we understand what the individual’s side effects may be of any particular therapy available to them. Of course, we need to figure out if their insurance company will pay for these treatments, they’re often exorbitantly expensive, some of the treatments we use could cause tens of thousands of dollars per year. And the patient will be on these things long term. So access, insurance, approval, copayments, all things you need to sort out with a patient. And the next thing patients often wonders is, ‘How long do I need to be on this medication for?’ And similar to other chronic diseases, you know, like diabetes or hypertension, for example, they’re not curative. And so typically, most patients will be on these medications chronically for years or decades .

Brandt: People are amazed at how the body is able to pump out so many excess skin flakes with such factory-like efficiency. Here’s the basic explanation: With psoriasis, the immune system is over-active. It produces too many proteins called cytokines. Those cytokines send signals that cause the skin to regenerate much more quickly than usual, which leads to all the excess flakes. Biologic medications work to rein in these cytokines and block the over-production of skin cells. But biologic medications, potent though they are, don’t always deliver sustained results, so you may have some trial and error to find the right one for you. Vicky Wilkerson has tried various biologics for a few years now.

Wilkerson: I have been on five different biologics. You start the biologic, and they say that it takes six months to deem whether it fails or is treating your psoriasis. So the first biologic I was on, the six months came and went, and it had cleared my hands, which I was grateful for, but it had not cleared any other part of me. So then I had to switch and, and get on to a different biologic. And, you know luckily, the second biologic I was on, it worked well for me, it really did and worked well for like a year and a half, but then after that year and a half, it started failing. And so then I had to switch and go on to a different biologic. And it is just that same repeat all the way through – six months being on it, see if it works, or if it don’t work, then you have to switch and try something else.

Brandt: Dermatologist Dr. Mark Lebwohl says another problem is that some physicians are not well-versed in biologic medications, and don’t prescribe them as often as they should.

Lebwohl: And they’ll treat patients who are covered head to toe with creams and more creams and more creams. And patients sometimes come in carrying hundreds of creams that they were prescribed, when a cream simply is not the preferred treatment. Why did the doctors do that? There are several reasons. One of them is psoriasis may not be their area of interest, so they don’t bother to study the side effects and the beneficial effects of the new medicines.

Brandt: It’s important to find a dermatologist who is experienced using all the different psoriasis treatment options, so ask your doctor: Are you comfortable prescribing biologics for me?

Despite the many variables and hurdles of getting the right psoriasis treatment for you, Dr. Lebwohl feels optimistic about what the future holds.

Lebwohl: We’re at a period of time that’s actually starting to be called, you know, the golden age of psoriasis, because we can clear almost anyone, and we can, you know, we can do so in a way that is quite safe, and does not impose on the patient’s life, the way that our old treatments did.

Music fades up under final narration

Brandt: In the next episode of Getting Clear on Psoriasis, we talk about the challenges of dealing with the stigma of having psoriasis.

Teaser Soundbite (John Latella): I felt like a leper. I should be going around with a bell ringing, ‘Unclean! Unclean!’ Because in the early times, people with psoriasis were lumped in with lepers because they didn’t know the difference.

Brandt: That’s coming up on Getting Clear on Psoriasis. If you like what you heard, head over to Apple Podcasts and leave a 5-star rating and write a positive review. It’ll help spread the word to more people who might be in need of support. And if you know of someone living with psoriasis, be sure to tell them about this podcast. As always, we welcome your feedback, so send us an email to Psoriasis@GHLF.org.Until next time, I’m David Brandt. Thanks so much for listening.

Sponsor Credit: This podcast is made possible with support from Walgreens and AllianceRx Walgreens Prime, sponsors of the Global Healthy Living Foundation.

“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.

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Coping with Stigma

“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”

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Teaser Soundbite (John Latella): I felt like a leper. I should be going around with a bell ringing, ‘Unclean! Unclean!’ Because in the early times, people with psoriasis were lumped in with lepers because they didn’t know the difference.

Brandt: Hello, and welcome to Getting Clear on Psoriasis. I’m your host, David Brandt, and I’ve been living with psoriasis for more than 30 years. In this podcast series, we bring you stories about different people’s experiences with psoriasis, and hear from medical professionals who treat the condition every day. Our goal is to offer tools and resources to help you manage your psoriasis, seek out the best treatment options, and live a more full and productive life.

Disclaimer: This podcast is for general information purposes only and should not be substituted for medical advice. Please consult your own medical professionals with any questions regarding a medical condition, advice, diagnosis, or treatment.

Music up full then fade under and out

Brandt: Psoriasis patients pay a hefty cost. And it’s not just because their medications are so expensive, or the inevitable battles in getting insurance companies to cover treatments. The price tag also includes the emotional cost in trying to convince others that psoriasis isn’t contagious – that it cannot be spread by person-to-person contact. Dermatologist Dr. Mona Gohara says unlike a lot of other diseases, psoriasis is on full display at all times.

Gohara: People see it, people see if you have psoriasis. They can’t see if you’ve had a heart attack. Or if you had whatever’s happening on the inside a kidney stone. They can see if you have psoriasis or bad acne or eczema. It probably becomes part of who you are.

Brandt: That is, of course, unless a patient takes conscious steps to cover it up. Many folks with psoriasis expend lots of time and energy doing just that — to avoid the stares in public, to prevent the shame and embarrassment of having to explain why their skin looks the way it does.

Wilkerson: Even trying to go to a grocery store, and to be able to pay for the stuff you get, and the cashiers are like trying to just pick the money out of your hand without really touching your hand.

Brandt: That’s 51-year-old Vickie Wilkerson, who’s lived with her psoriasis for 18 years.

Wilkerson: People walk way around or even on a different aisle when they see my skin when it was so bad with the psoriasis. I’ve definitely experienced the stigma that comes along with it because people do not understand what the psoriasis is about.

Brandt: Another psoriasis patient, Diane Talbert from Maryland, is 63. But she’s felt the psoriasis stigma from early childhood, including on her first day of school when she was just 5 years old.

Talbert: They told me I couldn’t come in because I was covered from head to toe in psoriasis. And they thought I was contagious. So I knew from that moment that I was different. I was quarantined for three months. No one had ever seen anyone with severe psoriasis.

Brandt: John Latella, a 79-year-old retiree from Connecticut, has had his own uphill battles against the stigma of psoriasis.

Latella: It made me feel anxious. It made me feel less than other people. I felt like a leper. I should be going around with a bell ringing, ‘Unclean! Unclean!’ Because in the early times, people with psoriasis were lumped in with lepers because they didn’t know the difference.

We took the kids to the public pool in town. A lifeguard comes over and says, ‘You have to get out of the pool because that stuff is gonna spread all over everybody else.’ I said, ‘No, it’s not contagious.’

Brandt: John told the lifeguard that he believed he was protected by the ADA – the Americans with Disabilities Act. But that didn’t seem to matter to the lifeguard.

Latella: ‘I don’t care what the ADA says … get out of the pool.’ So I got thrown out of the pool. I went to the town manager after and I said, ‘This was the most disgusting thing that ever has happened to me. I hope it never happens to another person. You better educate your lifeguards. Because if you don’t, I’ll bring a lawsuit against you.’ And I never went back to a public pool. I installed pools in my own yard. I stayed in my own yard. I just didn’t want to be in front of people. I didn’t want to have my family suffer that embarrassment.

Brandt: John Latella’s experiences are borne out by the results of a recent study. Dermatologist Dr. Mark Lebwohl says it was an experiment conducted by a Canadian colleague.

Lebwohl: He had first year medical students paint tattoos on their elbows when they first started, and it was during short-sleeve weather.

Brandt: These were tattoos depicting areas of psoriasis on the students’ skin.

Lebwohl: And before they started the study, they thought that psoriasis was a trivial disease. And then they walked around with those tattoos for just a few days. And the impact on the way other people treated them was so striking that to them, it suddenly became a serious disease.

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Brandt: Catherine O’Leary is a clinical psychologist in the U.K. who also lives with psoriasis. She describes the impact of having psoriasis in terms of different layers.

O’Leary: So like on the top layer, there’s having to deal with the physical symptoms, so itching, soreness, flaking skin, having to put on your treatments, those sorts of physical things, which can be quite wearing, quite tiring, might affect your sleep and generally affect your well-being if you’re not feeling great. And then the next layer is coping with other people’s reactions. So whether that’s perceived or whether that’s real, trying to hide it trying to answer questions about your psoriasis, trying to manage it at work and that kind of thing. And then the other layer is the coping strategies. Some people might isolate themselves from people, so perhaps not go out, not socialize, and in order to cope with it, and then that kind of thing can lead to loneliness, to low mood, to frustration. People might not do things that make them feel happy. So not go to the beach, not go swimming, feel like they’re missing out. And then that can lead on then to low mood to anxiety. And of course, once you feel low, you lose interest in things, and you stop doing the things that make you happy. And it all becomes a little bit of a vicious cycle.

Brandt: Catherine says there are strategies that people can use to counteract the stigma, and minimize negative reactions from others who may not know all the facts.

O’Leary: Something that I would advise people to do is to kind of rehearse a little answer that you would give people so that if you’re out and about, and a stranger says, ‘What’s on your leg?’, you don’t suddenly go into a panic mode and feel stressed and distressed by that. So I would just say to people, ‘It’s psoriasis. It’s not contagious. You know, it’s an auto immune disorder’ So I give a little bit of an explanation. I might say something like, ‘You know, I’ve had treatment for it, you know, as I’m being looked after.’ So it’s kind of a little bit of reassurance for people. And then I try to take control of the conversation. So if I’ve had enough of talking about psoriasis, and the attention being on my skin, I might change the subject.

Brandt: Another dermatologist, Dr. Joel Gelfand, says self-isolation is typical of people living with psoriasis. And he says it’s crucial to have some type of outlet for the frustration the disease can bring.

Gelfand: Human interactions that we all take for granted can be really burdensome and traumatizing for people with psoriasis. Many people with psoriasis often feel alone with their disease, that they have no one really to talk to about it. And that can be very isolating as well. And so I really encourage my patients to make sure they’re speak to their close friends or romantic partners about the disease and what it entails, because no one should have the with without being understood and getting the empathy they deserve for a condition they’re trying to battle.

Brandt: Outwardly visible conditions like psoriasis can appear off-putting or even repulsive. And people like Vickie Wilkerson face the double burden of battling the disease while fighting the stigma.

Wilkerson: People don’t know. They just take these myths and run with them. And, it’s just more knowledge is needed for people to understand about psoriasis. It really is.

Music fades up under final narration

Brandt: In the next episode of Getting Clear on Psoriasis, we see how lives can be improved — both physically and emotionally — by finding the right psoriasis treatment.

Teaser Soundbite (Vickie Wilkerson): It was just wonderful. It was kind of like seeing the sunshine right after a heavy rainstorm. It’s kind of hard to describe, but it just was an over joyful feeling like okay, I finally found something that’s going to work for me.

Brandt: That’s coming up on Getting Clear on Psoriasis. If you like what you heard, head over to Apple Podcasts and leave a 5-star rating and write a positive review. It’ll help spread the word to more people who might be in need of support. And if you know of someone living with psoriasis, be sure to tell them about this podcast. As always, we welcome your feedback, so send us an email to Psoriasis@GHLF.org.

Until next time, I’m David Brandt. Thanks so much for listening.

Sponsor Credit: This podcast is made possible with support from Walgreens and AllianceRx Walgreens Prime, sponsors of the Global Healthy Living Foundation.

“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.

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Importance of Proper Treatment

“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”

Music full then fade under

Teaser Soundbite (Vickie Wilkerson): It was just wonderful. It was kind of like seeing the sunshine right after a heavy rainstorm. It’s kind of hard to describe, but it just was an over joyful feeling like okay, I finally found something that’s going to work for me.

Brandt: Hello, and welcome to Getting Clear on Psoriasis. I’m your host, David Brandt, and I’ve been living with psoriasis for more than 30 years. In this podcast series, we bring you stories about different people’s experiences with psoriasis, and hear from medical professionals who treat the condition every day. Our goal is to offer tools and resources to help you manage your psoriasis, seek out the best treatment options, and live a more full and productive life.

Disclaimer: This podcast is for general information purposes only and should not be substituted for medical advice. Please consult your own medical professionals with any questions regarding a medical condition, advice, diagnosis, or treatment.

Music up full then fade under and out

Brandt: Many of the topics we’ve focused on in this podcast series have dealt with the difficulties of psoriasis: the itches, rashes and skin flakiness; the cost of medications; the insurance hurdles; and the stigma, shame and self-isolation that many people experience. Psoriasis is not curable, and some patients will have it for the rest of their lives. But newer medications are making it possible for a number of patients to experience clear skin for the first time in years.

Latella: Emotionally, it was like, the heaviest weight in the world was lifted from my shoulders.

Brandt: 79-year-old John Latella battled severe psoriasis symptoms — along with the stigma — for years.

Latella: You don’t know how great it is to be able to wear Bermuda shorts on a hot summer day. I used to go winter and summer with long sleeve shirts. And be out in the hot sun. I couldn’t take the long sleeve shirt off, because my arms were covered from my knuckles all the way up to my shoulders, with psoriasis. To wake up and not have to vacuum the floor every morning. Because you were so filled with scales.

I didn’t have staring anymore. I didn’t have people looking at me as if I’m different. Internally, emotionally, it lifts you. It makes you feel so much better about yourself. And you can move forward. You don’t have to be stagnant.

Brandt: In John’s case, getting on a biologic medication finally did the trick. Vickie Wilkerson of Shreveport, Louisiana, has seen similar results.

Wilkerson: I took pictures to where I could compare those pictures to what I was seeing on my skin, so that I can actually, you know, see that the medication was working. And once I really realized that it was working, I mean, it was just wonderful! It was kind of like seeing the sunshine right after a heavy rainstorm. It’s kind of hard to describe, but it just was an over joyful feeling like okay, I finally found something that’s going to work for me.

Brandt: Still, experts like dermatologist Dr. Mona Gohara caution that the life-changing results that many patients experience are not necessarily permanent.

Gohara: I think one of the biggest misconceptions about psoriasis is that it is curable. It’s treatable, but it’s not curable. This is an inflammatory skin condition, that is genetic, and your immune system, one’s immune system is kind of wired to give them psoriasis. We can give them long periods of remission, and really change their life. But it’s never curable, it’s treatable.

Brandt: And if left un-treated, psoriasis can worsen in severity over time. Dr. Gohara also says it’s crucial that a treatment plan for psoriasis be just as comprehensive as for any other serious health condition.

Gohara: Can you imagine a different scenario where you have a cardiologist, and she advises her patient to only partially treat their cholesterol? That would never happen. Or a GI doctor who’s advising her patients to only treat their heartburn a little bit. That just wouldn’t happen. So if we translate that mentality into the skin as being an organ, it’s optimizing your skin’s health by treating the psoriasis you know, maximally and recommending to the patient, that that is something that is reflective of good skin health.

Brandt: Other experts, like Dr. Ahmad Shatil Amin, say there are still a lot of factors to consider, even if psoriasis symptoms begin to improve.

Amin: Psoriasis may be connected with other diseases like heart disease, stroke, and diabetes. So patients who have psoriasis are a little bit more risk for all these things. So it’s really, really important that a patient who has psoriasis, especially a patient who has moderate to severe psoriasis, it’s really important that they see their primary doctor once a year to do an annual thorough checkup, to get any appropriate blood work done. Because we want to be able to mitigate and check for all these other risk factors.

Brandt: As people continue to struggle with their psoriasis every day, many wonder if their quality of life can ever get better … ever return to something like it once was. Dermatologist Dr. Joel Gelfand believes the answer is ‘yes.’

Gelfand: What I explain to a lot of my patients is that what’s very normal for us as humans is to get used to our new normal, and we forget what life was like without psoriasis. And oftentimes, you don’t realize the accommodations we’re making in our life, you know, the clothing choices we make to try and cover our psoriasis, the time we take each day to manage it. The professional and social opportunities we don’t avail ourselves of because of this disease. And so we need to be mindful of that. And recognize that with the advances we have, for many of our patients, we can do better than they currently are if they’re still struggling with their disease.

Brandt: To wrap up this episode of Getting Clear on Psoriasis, I’ll leave the final word to Dr. Mona Gohara.

Gohara: I want everybody who’s listening to this podcast today who may be struggling with psoriasis, or who has struggled with psoriasis: Realize that science has come so far. And even in the early 2000s to now, psoriasis treatment has drastically changed. There are a tremendous amount of options, there are a tremendous amount of resources, there are a tremendous amount of experts, there is no reason to suffer and struggle with this condition.

Brandt: If you like what you heard in this episode, head over to Apple Podcasts and leave us a rating. It’ll help spread the word to more people who might be in need of support. And if you know of someone living with psoriasis, be sure to tell them about this podcast. As always, we welcome your feedback, so send us an email to: GettingClearPsoriasis@GHLF.org.

I’m David Brandt. Thanks so much for listening.

Sponsor Credit: This podcast is made possible with support from Walgreens and AllianceRx Walgreens Prime, sponsors of the Global Healthy Living Foundation.

“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.