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Question:
Hi Amie, Thanks so much for your kind and informative response in the news group 
Thanks also for changing the subject heading–my brain wasn’t working too well last night! Today I called a SD organization.. The woman (whose name was Amy with a "y" 
) gave me a lot of reassurance. She also gave me names of people to call who have had SD for years. Things don’t seem quite as bleak today. Time will tell. Best wishes, Diana
Response:
Amaranth56 wrote: > Hi. I’m new to this newsgroup. My mom was diagnosed about a month ago. She > doesn’t want to talk about it, and the docs won’t tell me much, except to > expect it to get worse. She’s been on Penacillamine for 4 weeks now, and she’s > worse than she was a month ago. She cries and sleeps so much, it’s scaring me. > Is this part of the disease? The meds? Emotions? I don’t even know what > kind of scleroderma she has. There’s nothing on her skin, and it seems to be > limited (for now) to the tissues in her legs, just up to the knee. > I can’t imagine the courage it must take to face this disease. Best wishes to > all of you
I don’t know about anyone else, but the first year after diagnosis was hell for me. None of the possibilities are good, and the statistics about the _probabilties_ are just beginning to be published with some confidence. Until the disease progress slows or levels off, you always feel at risk for the worst-case scenarios – disfigurement, serious internal involvement, etc. Yeah, I’d agree that it’s depressing! Consider also the fatigue associated with the disease, and the utter frustration with that. Your mom may also be experiencing pain, which can wear you down physically and emotionally. It seems that you have some knowledge – you knew there were different "kinds" of scleroderma. There are many SD and related websites for more information, and you should definitely contact the Scleroderma Foundation for information both about the disease and about support for you and your mom. You don’t mention your age or hers, but if you’re still living at home, this can be very difficult for you, too. The SF also, I believe, maintains a listing of doctors who specialize in the treatment of SD. D-penicillamine is only one of several conventional treatments being used. Please feel free to ask more here and let us know how it’s going. — Amie http://pw1.netcom.com/~yaussy/
Response:
Hi. I’m new to this newsgroup. My mom was diagnosed about a month ago. She doesn’t want to talk about it, and the docs won’t tell me much, except to expect it to get worse. She’s been on Penacillamine for 4 weeks now, and she’s worse than she was a month ago. She cries and sleeps so much, it’s scaring me. Is this part of the disease? The meds? Emotions? I don’t even know what kind of scleroderma she has. There’s nothing on her skin, and it seems to be limited (for now) to the tissues in her legs, just up to the knee. I can’t imagine the courage it must take to face this disease. Best wishes to all of you
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