I was diagnosed in 2000 at the age of twelve with linear morphea on my right arm. I was lucky enough that it only affected my skin, and none of the underlying tissue. I was told that the disease would eventually burn itself out and that I would still have the scars, but that it would not affect anything more than the skin it had discolored and hardened.
Seven years later, at age nineteen, it suddenly became active again and within six months, it had eaten away almost all of the fat on my arm and I have developed nerve and muscle pain that does not go away. There is also a new band of morphea developing on my right breast.
Compared to other stories that I have read, my own experience seems mild. It may be shallow, but I don't want to become handicapped or more disfigured than I already am because of the morphea. I have played piano for fifteen years and now it is becoming painful. The thought of being unable to play is very upsetting.
My doctor has started me on Plaquenil, but if it doesn't work, then we are considering trying stronger medication or steroids. PUVA light treatment is no longer an option because of a botched light treatment when I was thirteen that caused second and third degree burns.
I am not sure whether I am more angry, scared, or sad that it came out of remission. Morphea is not just physical. It is frustrating to cope with a disease that does not have a known cause and no proven treatment. Perhaps the most important thing you can have with this disease is a group of close friends and family who support you. I am very lucky to have people who love me no matter how I look and who will always give their hope, strength, and friendship.
If you have experienced a similar problem, I would love to hear from you!
Email: [email protected]
Story edited 05-25-07 JTD
Story posted 06-11-07 SLE
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