When I was twelve years old, two small patches on my left thigh looked bruised, but didn't hurt and never went away. Over the next couple of years, the patches spread on my left thigh, covering most of it. When I was fourteen I went to Balboa Hospital in San Diego, where I saw a dermatologist who took a lot of pictures, but really could not diagnose the problem. This doctor suggested that since it didn't "do" anything, was just ugly that I should not worry myself about it.
For the next several years, the patches continued to spread and covered the majority of my left leg and patches appeared on my belly, back and the back of my right leg. After seeing many dermatologists, I still had no diagnosis. I would get general theories "it's a hormone dysfunction" or "it's just burnt out pigmentation" but none of these doctors could give it a name, a reason or tell me when the spreading would stop. I didn't wear shorts or skirt without hose for years because I was embarrassed by the appearance of my legs. As a teenager, it was devastating.
After nineteen years since the first symptom, I had patches on both arms and hands, both legs and feet, stomach and back, had seem countless doctors and still had no diagnosis or explanation. I had given birth to two children and was worried that I would somehow pass this on to them. I saw a dermatologist at Mayo Clinic who included me in Grand Rounds, where every dermatologist at the clinic got to see my patches. After putting their heads together, I finally had a diagnosis! Linear Morphea Scleroderma. In the past two years since the diagnosis, I have had no treatments to improve my condition (they didn't know of any) and I now have high blood pressure and high cholesterol for which no explanation can be found, although the patches seem to have stopped spreading.
Through my own recent research I have discovered that I really should have been seeing a rheumatologist all this time. I am trying to locate one with some experience with scleroderma and that will accept my insurance. I am now thirty-three years old and much more comfortable with myself, but it would be nice to see if some of the damage can be repaired.
Story edited 06-17-08 JTD
Story posted 10-03-08 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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