For years, George Barkley, 52, of Chicago, spent a great deal of time and mental energy taking care of his severe psoriasis and hiding it from others.
He scheduled his life around exams, treatments and applying medications. He wore long sleeve shirts and long pants even in the hottest weather to cover the thick red lesions on his arms and legs. He never wore dark colors, which would show the scales that were constantly shedding from his skin. He would rarely remove a jacket or sweater in public or even move more than necessary as that would unleash a flurry of scales.
At the same time he was hiding his symptoms, he was enduring the intense discomfort of psoriasis in silence. "It feels like an extremely
severe sun burn on top of the worst itching possible," Barkely explained.
As a real estate appraiser for multimillion-dollar skyscrapers, business meetings and travel are a routine part of his life. As his disease progressed, he found traveling difficult, as it was painful to sit for long periods. He would take an oatmeal bath before bed to soothe the pain, but still, he sometimes got as little as two hours of sleep making it difficult to concentrate on the long and detailed reports he writes at work.
"I did a real good job of hiding it, even though I was uncomfortable a lot," Barkely said. Inside, he was seriously discouraged. He felt he lost control of his life to the disease.
Psoriasis affects about 2 percent of the population in this country. It is not contagious, tends to run in families, and usually appears in people who are between ages 15 and 35, but can strike at any age. The disease started for Barkley when he was in his early 40s. For the first several years, his symptoms were mild and well controlled with standard treatments: topical medications, ultraviolet light therapy and steroid injections. Over time, the condition spread to more parts of his body. Several years ago, he was getting 20 steroid injections per month, but they began to lose their effect. He spent a good deal of time researching his options. In all, he has seen about 10 different doctors and has tried dozens of prescriptions.
Last spring, Barkley saw Kenneth Gordon, M.D., a dermatologist at Loyola University Health System (Loyola), who enrolled Barkley in a clinical trial for a new psoriasis medication. Gordon joined Loyola to establish a psoriasis clinic and participate in clinical and translational research on psoriasis (studying the effectiveness of new treatments and the biological mechanisms that make them work). Gordon's work complements the basic science research on psoriasis already underway at Loyola under the direction of Brian J. Nickoloff, M.D., Ph.D.
"The emotional toll of psoriasis is often underestimated - even by physicians," said Gordon, who is on the medical board of the National Psoriasis Foundation. "The amount of disability associated with psoriasis - the physical day-to-day disability and emotional ability to participate in life - is as bad as with any chronic disease."
The good news for psoriasis sufferers is that psoriasis is now the biggest area of research in medical dermatology. Only within the last 20 years have scientists discovered that the immune system plays a major role in the disease. Nickoloff's work was pivotal in that discovery. Hence, the newest therapies, known as biologics, target the immune system. The first biologic medication for psoriasis was FDA approved by the U.S. Food and Drug Administration earlier this year, and more are on the way, Gordon noted.
"This is a tremendously exciting time for people with psoriasis. For patients who have given up, now would be the time to give it another try," Gordon said.
Barkley said the experimental drug he received has been a "miracle." In only a few weeks, the disease that had ruled his life for years was gone. "It has turned my life around and turned my attitude around," he said. Now he is doing things that he had given up: riding a bike, taking a vacation to the beach, working out at the gym. He no longer has to work his life around treatments, baths and hiding.
To see a dermatologist at Loyola, call (708) 216-8563.
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