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Hello,
My name is Ryan and I have a friend who discovered that her daughter who is 6 years old has systemic scleroderma. I havent known this friend for long but do know it has been hard on her and her whole family. Im reaching out for this little girl to find out as much as I can to help her. Any information will be really helpfull.
Hi Ryan,
My son was 11 when he was diagnosed with systemic scleroderma. The systemic version of this disease (which comes in many forms) is very rare in children. The best advise I can give your friend is to find a pediatric rheumatologist familiar with systemic scleroderma -- even better is he/she can find one who has actually treated a child with the disease. Even in children, though, it is different for everyone.
If I can answer any general or specific questions for you , please feel free to ask! Best of luck to you and your friend.
Melissa
melissa,
Thank you for the advice, So I had a few questions to ask. First one being what kind of treatment did your son receive? How many years has it been since he was diagnosed?
Hello,
My son began experiencing his symptoms in Fall '08, when he was 10 years old. His diagnosis came this year, Summer of '09, right after he turned 11. His two main medications to treat the disease are methotrexate (12.5mg/week) and prednisone (20mg/daily). He takes various other medications, including niferdiac, prevacid, folic acid, and naproxin. He also spends 45 minutes each week with a physical therapist and 45 minutes with an occupational therapist. All these things combined give him a "mostly" normal life, "most" of the time.
I hope this helps a little. Please let me know if I can answer anything else.
Best wishes --
Melissa
Hello Ryan,
I'm Eva, I was diagnosed with systemic Scleroderma at the age of 5 it's now been 16 years of that. I'm now 21 years old. My best advice is to find a pediatric rheumatologist, Hopefully one that is really willing to help cause a good doctor makes all that difference. It's a great thing your doing by being there for your friend. If there is any questions I can answer please feel free to ask anything:)
Eva
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