Does anyone know anybody with Schleroderma?

Question:

My partner has got it and it has affected his lungs - we are finding it really hard to come to terms with this long term illness - he may even need to have a lung transplant in the future.

How can we adjust? It would really help to speak to other people with the disease

Answers:
I knew someone who had it but it was only her skin that was affected. It was very hard for her to move.
There is a foundation for it--they might have support groups or message boards. Link below.

Other Answers:
a friend of mine at work has it-but hers is not in the inside of her body its on her back and sometimes her neck-another friend of mine at work her mother-in-law had it on her organs and just recently passed away-im sorry what your partner is going thru-what does the dr tell you the percentage of living w/o a lung transplant-usually its starts spreading to other organs too-maybe talk to hospice-im sure your partner is in alot of pain too-maybe they can help you cope

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Does anyone know anybody with Schleroderma?

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