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Jason: Linear Scleroderma

I first found what turned out to be linear scleroderma at age seven, although I wasn't diagnosed until sixteen years later. Doctors just had a hard time diagnosing the tough patch of skin on my neck and lower back.

I went to Mayo Clinic three times as a child and teen with the only result being told, "at least this doesn't seem life threatening." Fortunately, my family doctor realized that the symptoms appeared to be those of an autoimmune disorder and he treated me successfully (in regards to pain) with medication and cortisone injections.

I actually was finally diagnosed with a localized form of scleroderma by the same dermatologist that I first saw sixteen years earlier!

Men who have this disease are at a genuine disadvantage as diagnosis is not as quick and the public is unaware that men can suffer from this condition. I wish there was a way to increase awareness.

I was told that this would go away as I became an adult. It hasn't. The areas on my neck and lower back have now connected into one massive lesion that covers by entire left back. I have had doctors, who instead of offering any hope for relief from pain, have instead said that pain medication is the only option, refusing to put me on methotrexate or other treatments that may slow the progress, and told me to "just be thankful you don't have the systemic form."

I have recently been diagnosed with Raynaud's as well, have had gastrointestinal difficulties more common to systemic forms, and have witnessed these lesions grow and deepen rather than decrease in size.

I say all of this not to complain but to proclaim these two points loud and clear: Men also have scleroderma and this disease follows no rules. Use the latter point to take charge of your health care so that this disease becomes something you live through instead of something that lives through you.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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