Me and My Psoriasis

A patient describes her 20-year search for a psoriasis treatment.

From the WebMD Archives

It's summer again, so while everyone else in Michigan, where I live, is shedding sweaters and jeans for tank tops and shorts, I'm looking for cover.

This is a yearly ritual, poring over catalogs in search of a breezy, near-ankle-length skirt and chic little cardigan to hide my patchy skin. Those bold-print maxi dresses that are in vogue could solve the problem, but really, how many yachting parties and clambakes do I attend?

Stubborn, stubborn psoriasis. You retreat with the sun's rays, but barely. You force me to explain that you're not contagious, just ugly, and to stand around in long skirts feeling like a priggish librarian among the happy, half-naked revelers around me.

It's been seven or eight years since I saw a dermatologist, and not because I like shopping for clothes so much. The last one went through the routine: a perfunctory look at my arms and legs, a scrawled prescription for a topical cream. Then a suggestion that I try a biologic medicine that wasn't developed for psoriasis but cleared up patients being treated with it for rheumatoid arthritis. I would have to inject it daily and it would cost around $1,200 per month.

Those two facts resounded: daily injections ad infinitum and another monthly mortgage payment.

Then: How long would I need to be on his medicine and what would it do to my liver?

Then: Was a smooth hide, one that wouldn't mark me as damaged, worth all the effort and expense?

I knew on the ride home that I had come to a turning point -- that I had to find another way to get clear after 20 years of treatment for an incurable disease.

Psoriasis is a disorder believed to involve the immune system in which skin cells rapidly produce at sites like joints, forming red or white patches; 4 to 5 million Americans have it in various forms, according to the American Academy of Dermatology. Mine is mostly confined to my knuckles, knees, shins, and ankles.

When I was diagnosed in college, it was a serious blow to my vanity. I was young and eager to taste all the freedoms of life on campus, but my unsightly elbows and knuckles altered my direction. I grew cautious in romance, lived in long sleeves, and spent a lot of my waking hours at night with friends, watching obscure films and talking over endless cups of coffee. Intellectuals didn't spend time preening and buffing and tanning; our bodies were beside the point.

In the meantime, I cared deeply. I visited dermatologists, whom I suspected thought of psoriasis as a medieval curiosity. They didn't seem to know much about psoriasis and I didn't know anything -- nobody in my family has it -- except that I wanted to drive it away.