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Laura C: Mother of Morphea Scleroderma Patient

My next plan of attack is to find a rheumatologist who can properly diagnose and monitor the morphea.

My thirteen-year-old son was diagnosed with morphea in September 2000. He is very athletic and does not seem to have any physical limitations from it. He recently tried out for the seventh grade basketball team at school and made the team.

Early last summer I noticed skin discoloration on his abdomen that looked like bruising. I did not think much of it since he always has some sort of injury going on. When the discoloration was still there a couple of months later, I took him to his pediatrician, who suggested he go to a dermatologist.

Since that time we've seen several dermatologists, and basically they say this will go away on its own. He had baseline blood work done and all the tests are in the normal range. He'll have the tests done again in the Spring and compared to the baseline.

He has developed some additional lesions on his lower back and both thighs. All of the discoloration is on the right side, with the exception of one on the back of his left thigh.

One of the lesions on his right thigh seems to be Guttate Morphea; but that is only my conclusion, and not a doctor's. The doctors do not seem to realize there are variants of morphea.

Initially we were applying a steroid cream but have discontinued doing that, with the doctor's agreement, since it did not seem to be making any difference. We have a stronger steroid cream that we can begin using if there is a change in the skin.

My next plan of attack is to find a rheumatologist who can properly diagnose and monitor the morphea. If the problem does not progress any further I will be thrilled; however, if there is a change, I want it to be noticed early so that it can be properly treated.

I have read many stories on the various scleroderma web sites and have seen stories where the morphea was accompanied with other problems. I am interested in hearing from people who had morphea as a teenager and how they are doing now. Did the morphea eventually go away, did other problems arise, did you have treatments, or do you have any advice?

Thanks ahead of time for your replies.

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SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.