At age sixteen I developed what I thought were bruises on the biceps of both arms. Two spots, same size and shape and everything, on both arms. I assumed they were bruises from carrying boxes but, of course, they never went away. Then more came. Each time a new spot appeared, another one just like it also appeared symmetrical to it.
The first dermatologist I saw said that I had morphea. He said that it was kind of like scleroderma, but not as bad. He said that I had nothing to worry about and that it would go away on its own. This scared me to death because my aunt has scleroderma and was not and still is not doing well. So I went to see another doctor who actually took a biopsy this time and told me that I had morphea, but that I also had lichen sclerosus et atrophicus. All my research afterward seemed to say that this disease affected primarily the genitals and I had none of those symptoms.
Then at about age eighteen I developed a single spot, the first one that did not come with a twin. This spot began to get itchy and feel smoother than the rest of my back. It was also much larger than any of my other spots, about the size of my hand spread out. I had given up on trying to find out about the disease and so I left the spot alone and it did harden and become shiny.
At about age twenty-two I decided to see yet another dermatologist who decided that since I had had no new spots in four years that the disease must be "burnt out" and since the spot on my back was not really bothering me that I should just go home and not worry about it. So that is what I have done.
I have a few new spots in the last two years, on my breasts and on my hips. I also had some kind of unexplainable seizure two years ago that was followed by an MRI which showed what could only be explained as a white dot. No one I see seems to give me a straight answer no matter how many questions I ask. I am confused by the Internet information because I cannot figure out which types are which and what it is I may have, although I am convinced that it is not lichen sclerosis et atrophicus.
If the disease burns out can it reoccur? How does stress really affect the disease? Could that be my problem?
I have also found bits of research to suggest a connection between morphea and ankylosing spondilitis, which my father has, which is something about copper levels in the skin.
I am now twenty-eight going on twenty-nine very soon. That is now thirteen years with no answers.
Email: [email protected]
Story posted 11/25/03
Story Artist: Judy Tarro
Story Editor: Judith Devlin
Judy Tarro, ISN Artist, created the digital photo to illustrate the story on this page.
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to: