Jenny: Morphea Scleroderma

It started like a purple bruise that never healed. Then the itching began along with noticeable loss of pigmentation. I kept ignoring the symptoms thinking it was a sunspot or something of that nature. When my leg became swollen, I could not ignore it anymore.

I went to several doctors. I was told it was a fungus and, further, that it was clearly all in my head. I went to a dermatologist who told me it was vitiligo. Another said it was lichen sclerosus.

Eight months into the disease, I was finally referred to a rheumatologist who has recently diagnosed me with morphea scleroderma. I have started taking medication for it, but it is really too early to see any signs of improvement. I hope it works.

~ Update - May 2001 ~

Life with morphea is harsh. I have experienced more difficulty with what should be easy tasks. I continuously find myself opening a two-liter bottle or a milk jug with my teeth. My hands are no longer able to close into a fist position. I cannot straighten my left leg or my left arm. I wear sandals most of the time because my foot is in such bad shape. I hate this disease and have trouble understanding how or why this is happening to me. I miss the person I was and hate the person I have become.

I have hope that one day I will be able to wear shorts and run alongside my son without having to worry about what people think when they look at me.

Now I am on medication recommended by a doctor from the University of South Florida Health Sciences Center. I hope that it will work for me.

I am twenty-three and terrified that I am limited to what I do and how I do things. I think about my future and find more and more things that I have not done and probably will not do. I would love to go back to school, but worry about having to write papers, anticipating the pain that my hands would experience.

Although I am finding this to be the most terrifying and terrible time in my life, even more so than when I miscarried, I am finding a little bit of self-acceptance. This new treatment has reduced some of my symptoms and given me hope. As I see or feel any improvement, I believe my 'self' will start returning.