I don't have many memories without psoriasis. It appeared when I was five years old, and it covered over 80 percent of my body for the first 40 years. I have had psoriatic arthritis for 25 years but didn’t get the proper diagnosis until 10 or 12 years ago. I have thought over the years, Why did it take so long to get the right diagnosis? How do I know now that it's not plain arthritis or rheumatoid arthritis? I told my doctors for years that I had this disease, but they never put two and two together that there was a connection between psoriasis and psoriatic arthritis.
The question that turned my life around
This has been a long, hard journey for me. I was in a shell my whole life.
One day it all changed.
I went to an event and I asked the question, “What can I do to help?” I was told at that time that I had a voice and should use it. I didn't know where to start or what to do, so I started a support group. I ran an ad in one of our free newspapers. I had 32 people show up at the first meeting. I was scared to death, didn't haven’t a clue what to do or say. I didn't even have a bottle of water to offer.
Two important lessons
I have learned many things along the way. However, among the most important are these two lessons:
I have learned not to beat myself up anymore. I tried and let that emotional pain go. I learned that I have to let go and move forward. I decided years ago to fight this battle on the inside and out, that I would not let my emotions win.
I have learned that many people are suffering in silence. There are people walking around with this disease not knowing what they have or what to do about it. My goal is to educate the community.
Education and empowerment are my cause
My cause in this life is to help those who can't help themselves and to educate others. I have come across many people who think they have a fungus or arthritis. When you know better, you do better. There are many people without insurance or the proper means to buy medication for themselves. Being a support group leader has allowed me to work with dermatologists who will give samples to patients in need and see them. I also help find organizations that will help with medicine and copays.
There is still so much research to be done, but we do know that our T cells are responsible for our symptoms. We know that these cells fight off infections. We don’t know why T cells are active with us with psoriasis, which causes us to get plaques. When they lodge in the joints they cause the arthritis.
The promise of future treatments
Always talk to your doctor about what is best for you. In the past I have been on anti-inflammatory drugs, corticosteroids, creams, gels, methotrexate, light treatments, and now on a biologics. I have noticed that after having psoriasis for over 55 years and psoriatic arthritis for 25 years that I’m in pain every day even with the medications that I am on.
I honestly don’t know what the future holds for me. My current treatment is very expensive and carries side effects. We have come a long way in 50 years. Psoriasis and psoriatic arthritis are not news worthy as some other diseases, but we are getting more funding than in past years. There are new treatments coming down the pipeline that are close to FDA approval. This should bring a smile to millions of people with psoriasis and psoriatic arthritis. I know I am smiling.
Why I share my story
I've been touched by so many people I've met on this journey. I hope my story will touch others. I talk candidly about my ups and downs. I like to share my story so that people can get more insight into who I am. I share my pains to inspire, not for pity. My triumphs are your triumphs; I hope to touch those also affected by this autoimmune disease.
My ultimate goal is to help find a cure for this disease. It’s hard to find people who understand what we are going though. If you feel alone, talk to your family and friends. This may help them to understand better.
From patient to advocate
I have been an active advocate for psoriasis and psoriatic arthritis for over a decade. I go to Capitol Hill yearly to lobby and frequently speak at town hall meetings. I have spoken in front of the FDA about living with psoriasis and psoriatic arthritis, and I was asked to be on a panel as a patient advocate with several dermatologists. I ran a support group for ten years and am presently a volunteer for several organizations. As a blogger and patient advocate, my story has been featured in several websites and publications.
In addition to speaking out about this disease, I love being a wife, mother, and grandmother. I have a great husband who is my number-one supporter. I have two sons and four grandchildren. My oldest grandchild is attending college at Alcorn State University and wants to become a dermatologist.
While I may not have found a cure for psoriatic arthritis, speaking out and telling my story has empowered me to live with this illness in a new way.
It is possible to live a full life with psoriatic disease.
I am proof of that.