I have lived with psoriasis and psoriatic arthritis (PsA) for 50 years, but it is something I have; it does not define who I am. You can look at my story as a study in the progression of this disease, with an emphasis in my case, on progress and temporary relief. I have developed an attitude of determination in coping with the pitfalls – looking for positivity, educating myself and others about psoriasis, and advocating for finding the best treatments for all of us. In some ways, it has been a partnership of sorts with psoriatic disease. As a result, I am able to do what I want within limits, and despite a number of impactful surgeries, I walk with purpose through life without a wheelchair.
A Challenge Unfolds
During law school in 1972, I noticed an abundance of scaling on my scalp. Dandruff shampoos did not alleviate the problem, so I went to a dermatologist who diagnosed it as scalp psoriasis. At the time, I was prescribed a coal tar shampoo, which triggered a redness on my forehead, so I then tried the Grenz ray machine. Both of these treatment options are still around today, but we have seen incredible progress in the options available to us now.
As the disease spread beyond the scalp, the treadmill of treatments continued. I tried topical ointments, tar baths, and phototherapy performed at my health care provider office. At that time, psoriasis was considered a skin condition, when in fact we know today that it is a chronic immune-mediated disease associated with inflammation throughout the body. The misunderstandings and misconceptions led to a number of additional challenges and stigmas for those impacted by psoriasis and PsA.
At the time of my diagnosis, I remember that topical treatment options were messy, greasy, smelly, inconvenient, time-consuming, and frankly, hit or miss. These were merely localized spot treatments for what came to be known as a systemic disease. All the while, those of us with psoriasis and those who cared for us were left to try a wide variety of treatments. We were desperate for relief. At one point, a dermatologist actually gave me multiple intralesional injections of cortisone. I looked like a pincushion, but luckily my clothing covered my body.
A tennis injury to my knee in 1976 led me to an orthopedic surgeon and then a rheumatologist, who reviewed x-rays and noticed psoriasis on my arms, so he diagnosed my problem as PsA. I did not realize the potential severity of the disease and its long-term implications for me.