Systemic Scleroderma

[MsMAC]

I was wondering if anyone on this forum (or their family member) might have scleroderma. My daughter was diagnosed with this condition last week after suffering for 9 months with swollen, painful hands and feet. I have spent many days crying because I understand this to be a fatal disease as it progresses but I can say for now that it has totally changed her personality. She has always been my crazy, fun-loving daughter and now she's in constant pain and I suffer with her. If you have any knowledge about this disease, I'd appreciate your insight. I have found a couple support groups online that I've joined but I'm seeking any and all resources.

[Warpy]

1. Progress has been made treating it

The best overview I know of is at http://www.hopkinsscleroderma.org/scleroderma/ You've probably already found http://www.scleroderma.org/site/DocServer/systemic.pdf?docID=325

While it is chronic and progressive, the progress has been slowed considerably and treatment can also reduce the symptoms.

http://www.scleroderma.org/site/PageNavigator/patients_whatis.html is also a good resource to keep up with drug trials and other treatments.

[MsMAC]

2. She's been to Mayo Clinic three times in September and has an appointment with

a scleroderma specialist at KU Medical Center in Kansas City in about a week. We (the family) have discussed taking her to Johns Hopkins but nothing has been firmed up. I was interested in chatting with people who have this disease and learning how they deal with the everyday issues and if they are able to work. Thanks for your reply, I'll check out those sites.

[Warpy]

3. Fortunately, it's very rare

I saw few cases when I was a nurse. Most managed to work, although those in the late stages of the disease (before they got better at slowing it down) found the facial changes the hardest to bear.

It's a rotten disease. I hope the treatments work quickly and work well for her.

[MsMAC]

4. Currently, her hands and skin are the most affected. She is also

a nurse and has managed to continue working except for those trips to MN! She has a sister who is also a nurse who is a wonderful advocate for her and we are always seeking new information.