New Support Group For Psoriasis Patients

By W. Gifford-Jones, MD and Diana Gifford-Jones —— Bio and Archives September 23, 2007

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Sir William Osler, one of this country’s greatest physicians, remarked that no doctor thoroughly understands a disease until he suffers from it. He could have added that this also applies to patients.

The ones who find it hard to get information about their disease when doctor visits today are limited to 15 minutes or less. Now there’s a way for patients with psoriasis to communicate with others who have this disease. It’s a great way for patients to help each other. Psoriasis is a disease in which the patient’s body literally shoots itself in the foot. What happens is that the immune system that normally protects the body from disease goes on a rampage and attacks the skin and other body organs. It’s as if an army suddenly goes bonkers, decides to stop fighting the enemy, and turns its guns on itself. Psoriasis varies in its severity. Some patients with psoriasis have such small plaques they’re not aware they have this disease. Others have extensive lesions covering much of the body. Patients with psoriasis have “speedy skin”. It normally takes skin cells 30 days for the deepest layer to reach the surface of the skin where they’re eventually cast off. But for patients with psoriasis these cells reach the surface in a mere three to four days. This accelerated growth results in the typical raised, thickened, circular red plaques covered by fine silvery scales. They vary in size and can cover large parts of the skin. And it’s a frustrating disease for doctors to treat. Osler was once asked by a young doctor how he treated psoriasis patients. He replied, “I send them to Egypt”. The puzzled doctor asked, “For the climate?” “No”, Osler smiled, “Egypt is just the farthest place I can think of to send them”. Now some of his frustration would be eliminated as there’s been a major change in treatment. In the past, therapy involved a variety of skin medications such as cold tar and ultraviolet light. But this is a tedious, shotgun approach, often with questionable results, leaving patients discouraged and dejected. Fortunately, a new class of drugs called, “biologics”, is available. These are like smart bombs that go directly to the target and block T cells from shooting psoriasis-laced bullets at the skin. Several drugs such as Enbrel, Raptiva and Remicade are “suppressive agents” given by injection at regular intervals with no holiday break. Another drug, Amevive, is a “remittive” one with injections given weekly for 12 weeks. This is followed by a drug-free holiday for another 12 weeks allowing patients to lead disease-free lives for considerable periods of time. And Amevive can be given by a physician or self-administered. All of these smart bombs have been a boon for many patients. But psoriasis is an unpredictable disease with ups and downs. This is why there’s more to treating psoriasis than medication. And why “Psoriasis Support Canada” can add another powerful weapon for both doctors and patients in treating this disease. Remember the movie, “Network”, in which an annoyed TV anchor shouts out the window, “I’m mad as hell and I’m not going to take it anymore”? Ranting and raving on-line is a good way of blowing off steam when facing this problem. And the web site www. psoriasissupport.ca allows patients to express their frustration to other listeners. For example, one sufferer recently wrote, “I drink lots of water”. This is good advice, not only for people with psoriasis, but also for everyone. It’s a natural moisturizer and is readily available to all. Another person wrote, “Between the ages of 9-12 I suffered from severe psoriasis that kept me in hospital for three years. I tried all kinds of cream and after trying 20-30 different types I have found the right one.” But equally important, Psoriasis Support allows patients with this disease to compare notes about treatment. What has worked and what hasn’t. How they handle psoriasis flare-ups. And how to accept the fact that if life gives you a lemon, the best decision is to start making lemonade. Communication has always been a potent weapon in treating disease.