Speak Up and Advocate!
Do you live with psoriasis or psoriatic arthritis? Consider speaking up! 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 find it important to let others know how it feels living with psoriasis and psoriatic arthritis. Raising awareness, eliminating stigma, and finding a connection are all a part of advocacy.
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.
Advocate for support
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, attended Town Hall meetings and conferences, spoke on Capitol Hill, and held 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 was privileged to be on the FDA panel and to let them 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 finding a cure.
We have so many new medications 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.
Over the years I have been an active advocate for psoriasis and psoriatic arthritis, speaking up and out about this disease.
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?