The pain of psoriasis is physical and emotional. Since the age of five, Diane Talbert has battled the autoimmune disease and the stigma that comes along with it. Below the self-proclaimed "Psoriasis Champion" shares her story with BlackDoctor.org and how she's advocating for more research with people of color.
I’ve had psoriasis for more than 50 years and psoriatic arthritis for 20 years or so, but was not diagnosed with psoriatic arthritis until 10 years ago. I knew something was wrong when my fingers were always stiff and I was always in some sort of pain. I had what I called sausage fingers - extreme swelling in the fingers, toes and nail pitting. Anyone who has psoriatic arthritis knows it’s not always the easiest getting diagnosed with psoriatic arthritis, as it is with other types of arthritis.
After much twisting and turning, my diagnosis was made by reviewing my medical history (process of elimination with the fact that I have had psoriasis my whole life). A physical examination was done, blood tests were conducted, and X-rays of the joints that had symptoms were what helped to determine it was indeed psoriatic arthritis. I was put on a treatment called biologics.
We go back to 1963, as a small child eagerly entering my first day of school. I remember being prohibited from attending class due to the teacher fearing my condition was contagious. My day wasn’t off to the carpet for story time with the other children. Instead I was sent to the hospital, while doctors struggled to figure out what was on my whole body.
You May Also Like
From the age of five, my head was shaved and I was quarantined for three months with 90 percent of my body covered in unsightly scales and painful days to years of misdiagnoses and in turn medical mistreatments.
Even years after being diagnosed, I continued to suffer greatly into my youth. The stigma associated with this condition is intense and I always struggled to fit in as a child growing up. In high school I refused to go to gym because it meant exposing my arms and legs. Kids laughed, pointed and made fun of me. I had few friends and associates in school. I grew up in Virginia, a very warm climate at times and I never once wore shorts or short-sleeve shirts.
As an adult, the struggle has continued, but I’ve learned how to better manage my psoriasis by going on different types of medications. This battle has taken on a life of its own and I’ve made it my mission to help others with psoriasis and psoriatic arthritis to let patients know that you can come out fighting.
You May Also Like
Over the years I have been an active advocate for psoriasis and psoriatic arthritis, speaking up and out about this disease. I attend town hall meetings, conferences and seminars to talk about this disease. I recently spoke at the FDA. I have a special interest in bridging the gap for psoriasis research in people with skin of color. The ultimate goal is to stop the stigma associated with this condition and find a cure.
I hope my story will touch others. My ups and my downs are what I talk about. I would 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 in the hopes of touching the life of those also affected by this autoimmune disease.
Do you have an inspiring story to share? Email [email protected] with subject line "My Story".
