The US Food and Drug Administration (FDA) is looking for psoriasis patients to speak at a public meeting in March about the impact of this disease on our lives and what we think of the treatment options. You can be sure I will be there—and I hope you will consider coming too. It’s a great opportunity to help represent the 7.5 million of us who live with psoriasis.
I feel it is important to attend these events about our diseases. We need to have a voice in our treatment and care. I have had psoriasis for 50 years and psoriatic arthritis for the past 25 years. I have been very committed, advocating for myself and others like me. Over the years I have been an active advocate for psoriasis and psoriatic arthritis, and I am now Executive Director of the nonprofit Psoriasis Network Support.
It is good to let others know how it feels living with psoriasis. I have had my shares of ups and downs. This disease has changed my whole life. I can’t even imagine what it would feel like to have clear skin or be pain free. This is a distant dream that I hope one day will come true. I can only imagine what my parents had to endure with my having this disease since I was a young girl. I can only imagine the pain they had to go through to keep me safe and happy.
I made up my mind over 10 years ago not to feel sorry for myself. I knew I had to do something to help myself. I started a support group, attended Town Hall meetings, conferences, spoke on Capitol Hill and attended some speaking engagements. I know that one day we will find a cure for this disease or at least help to find a cure. I have educated myself enough to be able to speak to people in the medical field and other organizations.
I also feel that everyone needs to know that there are people out there who care about us. We all want to get more information and to find out what makes us tick and why did this happen to us in the first place. We need to be empowered and an encouragement to others; we are not victims. It is good that others want to hear what the patients have to say; the FDA is listening to us and cares about what we have to say. This is amazing!!
I think the FDA meeting would be a great time for people with psoriasis to come out to educate about our disease. We need to be heard at a forum, and this is the perfect place to start. I am so happy to be a part of this.
We need to let the FDA know that we need more research for this disease. We don’t know what causes this disease, so how are we going to find a cure? We need to have a good understanding of why we get this disease, what causes it, why it affects so many of us in so many different ways? I think if we can answer some of these questions we would be on our way to find a cure.
We have so many new drugs that are coming down the pipeline for this disease, which is good. I wish they could treat more than one ailment at a time, have lower side effects and work a lot longer. I have been on seven biologics in ten years with the longest lasting only two years. Sometimes the side effects are worse than having the disease.
I think that it’s very important that the FDA allows our scientists to do as much research as possible so that one day we can find a cure. I want to be able to live a happy, active, pain free life. As a patient, I’m embracing the fact that we have people who care about what we think and what we say. I want to hear what they have to say about research. This will be interesting to me.
Everyone who can should come out for this event. You get to interact with other patients and learn as you go. We need to be knowledgeable about what is happening to us. I think it helps to know that we are not alone. We all have so much in common; we need to know how we feel and we need to be heard.
For more information on attending the FDA meeting, click here
I hope to see you there!