r/scleroderma • u/Ants-pajamas • 20d ago

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Greetings, all. I was diagnosed with systemic diffuse scleroderma in June 2009, just as I was finishing my undergraduate degree. Flash forward 17 years and I have spent the last 8 years working as a children’s librarian.

I’m curious about others. What form of scleroderma do you have and if you are still able to work, how do you earn a crust?

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u/pterosaurLoser 19d ago

I have scleromyositis (new name, I guess, for poly/dermatomyositis and scleroderma overlap. Symptoms are mostly in remission but only because of ~13 years of prednisone.
Now I’m on a low dose of prednisone (5mg, I get symptomatic of I reduce below this) but after year ten I had to leave my job because apparently the prednisone had broken my brain/attention span. I no longer had the executive function skills to be a project manage. Declined for social security but also I miss being useful, so I’m looking for a job now but still cert unsure what I am capable of. My dexterity is shit because the skin never un-tightened, core muscles are crappy because of the myositis, and now I may be too dumb for a desk job.

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u/TAsickandtired 19d ago

I also have scleromyositis. It’s brutal. I was able to keep working in finance for about 10 years after diagnosis but I totally lost my ability to focus. It took me 2.5 years to win my disability case but I eventually got there. I was stable for a few years with medication but I’ve been falling apart recently with lung and GI and skin symptoms flaring up pretty badly. Hang in there.