I have had psoriasis for 50 years and psoriatic arthritis for the past 25 years. I have been very committed to advocating for myself and others like me. I just recently came back from Boston, Massachusetts after being on a panel with Jerry Mathers of Leave It to Beaver. I have several other meetings lined up for 2017, one of which includes going to Capitol Hill to be heard.
It is good to let others know how it feels to live with psoriasis and psoriatic arthritis.
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 12 years ago not to feel sorry for myself.
I knew I had to do something to help myself. I started a support group, I attended Town Hall meetings, conferences, spoke on Capitol Hill and attend 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.
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 be 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!
It is so important to attend as many meetings and events about psoriasis and psoriatic arthritis, in order to speak up about our disease. We need to have a voice in our treatment and care.