Hello. My son Allen was diagnosed with scleroderma approximately one and a half years ago. First symptoms of his illness were aching bones/ joints. I almost felt crazy calling the doctor, what seemed to be, every week, sometimes twice a week about a different and sometimes the same pain.
During this time, he started to get discolored fingernails which I thought could only be some kind of bacterial/ fungus infection going on until they progressed into little sores on his fingertips. His pediatrician was out of town and the doctor we saw had no clue to what it was and sent us to see a dermatologist. She knew right away that what she was looking at was Raynaud's disease. She referred us to a pediatric rheumatologist in town. This team of doctors was great.
During this time Allen's skin started to become very thick and he had gotten quite a bit of pigment loss on his body as well. In the last year his skin has gotten so thick that it almost looks like snake skin. So, not only were we dealing with the finger ulcers, and faded skin, and all his aches and pains but we were dealing with him becoming less and less mobile.
With his tightness of skin he has a very hard time bending, walking up the stairs and for the most part he cannot walk for more than a few minutes without his legs giving out. He was on prednisone, along with about twelve other medications, and one day when he could not get off the couch as his legs would not bend, he sustained a broken left humerous bone in his arm.
It is now six months later and his arm is still broken. This disease has progressed so fast that his doctors were not sure what to do next for him so they referred him to a doctor in Washington, D.C., at the Georgetown University Hospital.
In order for me to make this happen, I have to have fund raisers to raise money to take him there as I am a single parent with disabilities of my own She had suggested undergoing cyclophosphamide treatments. We will be seeing her every three months for her to oversee his treatment.
Dr. Virginia Steen has been wonderful. She took the time to explain it all to us along with pros and cons of everything we needed to know and hear. Allen has had four chemo treatments now, but unfortunately he still feels the same. We do, however, understand that this drug may be helping with his heart and lungs which are not getting any worse.
It is a very tough decision as a parent to make when you hear all the side effects and pros and cons of the therapy. Allen has stayed positive during all of this treatment. He tries not to let anything get him down and if you were to just look at him sitting on the couch you would not know anything is wrong.
He attends aggressive physical therapy three times per week and has started a new high school also this year. He keeps smiling and knows that he has to remain positive and take it as it comes. He does not do much without a smile on his beautiful face. He is such a trooper!
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Story edited 09-10-07 JTD
Story posted 10-17-07 SLE
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