Until There is a Psoriasis Cure
After college I found a dermatologist I very much looked forward to seeing at my regular psoriasis check-up appointments. A number of dermatologists had treated my severe psoriasis and eczema, but he stood out as my favorite. He spent the time to get to know me personally, cared for my family, and respected my opinion on treatment choices. My wife and I affectionately called him Dr. O.
Dr. O marveled at the advances in psoriasis research, especially in the area of genetics. He prophetically declared in the early 1990’s that a psoriasis cure would be discovered in my lifetime. It sounded too good to be true, but I wanted to believe him. I wanted a cure. I desperately looked for something that would make psoriasis disappear from my skin and life.
Childhood and stigma
As an eight-year old child psoriasis symptoms began to erupt on my skin. My mom told me sleeping in an unwashed new polyester sleeping bag triggered the first outbreak. I didn’t understand at the time that those unwanted lesions would come to dominate my life. They felt mildly annoying and itchy—nothing I couldn’t live with. But with a strep throat infection a year later guttate psoriasis broke out all over my body. That’s when the messy, smelly overnight tar treatments and ultraviolet light treatments began. From then on psoriasis became much more than a minor irritation.
In my upper elementary and teenage years, I felt the full force of the stigma of having a visible condition like psoriasis. I tired of kids asking if I had poison ivy. Some incessantly teased and even bullied me on the playground. In high school I loved running track and cross country. But I hated changing in the locker room where the other students avoided me thinking my skin disease was contagious. One started rumors I had contracted HIV.
My psoriasis went mostly into remission after a six-week stint in a daycare facility the summer after high school graduation. I continued using topical medication and ultraviolet light (phototherapy) to keep the flares down. In my third year at university, though, my skin took a turn much worse. I could barely make it to class. I felt depressed and helpless. My dermatologist suggested I start taking a systemic chemotherapy agent used to treat psoriasis, methotrexate. Back then I needed a baseline liver biopsy to start therapy and another one after I reached a predetermined accumulated dose.
When I saw Dr. O for the first time I still took methotrexate, but I wanted to stop before I needed a third liver biopsy. He prescribed an oral retinoid, which combined with phototherapy, helped calm the psoriasis enough for me to function somewhat. Like all treatments up to that point, I tolerated them and the side effects. But I longed for so much more. I longed for that cure. Dr. O’s declaration of a cure in my lifetime lifted my spirits and gave me hope.
Twenty plus years later we still don’t have a cure. We do have biologics, which have immeasurably helped many with psoriasis. I personally have tried a handful of biologics with varying levels of success, frustration, and cost. We do have those who claim they have found a special cream or diet, but after trying many of those over the years, and spending more money than I want to admit, I remain skeptical.
Community to keep us balanced
We also have incredible psoriasis communities that continue to grow in supporting more and more of those who would otherwise be isolated. These communities are going strong online, and in-person in localities around the country, and the world. Some are active in advocacy and fundraising. I’ve enjoyed meeting and volunteering with groups in both Southern and Northern California. Members in these groups give their all to find a cure, educate, and support those with psoriasis and loved ones.
As long as I’m alive I’m ever hopeful that Dr. O is right about a psoriasis cure. But until there is a cure I’ve committed myself to not only advocate for myself, but for others with psoriasis as well. I passionately desire to thrive, not just survive, in the perilous jungle of living with chronic, severe psoriasis.
In my blogs I look forward to sharing my psoriasis journey with you—the ups and downs, the insights and outtakes, the inward struggles and moments of inspiration, and the treatments both old and new. There is still a lot of life to live even as we wait for a cure!
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