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By Michael Paranzino
When that very first patch of psoriasis appeared on my elbow during 10th grade, I was actually happy. It gave me a sense of solidarity with one of my older brothers, who had been living with substantial psoriasis as long as I could remember. It was not until eight years later, sitting in the hospital covered head to toe in psoriasis, that I realized the absurdity of welcoming that first patch. Now, I would not wish it on my worst enemy.
Psoriasis is a disease driven by the immune system that typically manifests itself as patches of incredibly dry, flaky skin. For many people with psoriasis, it never moves beyond some annoying patches on places like the elbows, knees, or scalp, but I am not so lucky. I am part of that one-third of patients with what the experts call "moderate-to-severe" psoriasis.
Psoriasis, because it is so unsightly, can be emotionally taxing--I have psoriasis on my hands and face, for example, so hiding it is not an option. Everyone who sees me sees it, and everyone who shakes my hand feels it. But psoriasis can also be physically draining--walking, bending, even sitting can be painful because of psoriasis on the feet, legs, arms, or on the folds of the skin. I am one of those psoriasis patients whose skin bleeds--somewhere--almost every single day, and it itches constantly and ferociously.
In short, psoriasis is dreadful. And the kicker is that the treatments for moderate-to-severe psoriasis offer a choice among unpalatable potential side effects, including risks of liver damage, kidney damage, cancer, and serious infections. And this is just to minimize, not eliminate, my psoriasis.
But many new options are now becoming available. Three new psoriasis drugs have recently hit the market, and others are on the way.
And not a moment too soon. You see, I now have a 3-year-old son. So while I have grown more or less accustomed to bleeding, and itching, and looking strange, every day of my life, I do not want my child to face that same fate. I pore over the statistics suggesting that I have given him a 1 in 4 chance of developing psoriasis. I have met several psoriasis patients who elected not to have children for this reason. I worry every time he gets a scrape, which, for a 3-year-old, means every day, because skin trauma can trigger psoriasis in those susceptible to it. I stare at the computer printout showing that the federal government spends one dollar per patient per year researching psoriasis, and I fret that he deserves more. I read that the pharmaceutical industry now considers the psoriasis market promising, and I am thrilled. It sure beats being ignored.
Comparing myself to other psoriasis patients, I consider myself lucky. While I have a more severe case than most, at least I have never been thrown out of a pool by a misguided lifeguard, like some other psoriasis patients I have met. I have not yet had the arthritis symptoms that make activity so painful for many others. And I did not have psoriasis in elementary school, when the teasing might have been horrible. But every day, some 50 American kids under age 10 are diagnosed with psoriasis. What about them?
While seeing psoriasis on my 8-year-old niece, or just imagining it on my son, can bring tears to my eyes, I remain optimistic, because the treatment options are rapidly improving beyond what I was offered during my first hospitalization in 1990. We're not out of the woods yet, by any means--my leg psoriasis bled, in fact, as I wrote this piece--but scientific ingenuity is bringing us closer to that scenario we are all looking for: better treatments with fewer side effects.
In the end, those of us with incurable diseases draw hope from scientists. Perhaps that's why I married a neurobiologist. She won't cure psoriasis, but someday, maybe somebody else's spouse will.
Michael Paranzino is a government affairs consultant in Bethesda, Md. His clients include the National Psoriasis Foundation.