My son Brandan was five years old when we found out he had scleroderma. Then the real nightmare started, as I was given this small little handout about scleroderma, which seemed to say that I was going to lose my son.
We went to the local hospital and used their library but most everything we found was on systemic scleroderma, which was worse that I thought.
I am glad our family doctor knew what it was right from the start. He sent us to Children's in Pittsburgh, which was a joke. Then we found Dr. Medsger in Pittsburgh. He is a godsend.
Brandan haslinear scleroderma on his right side and morphea on his chest pretty bad. He has gone through steroids, physical therapy, and methotrexate and nothing has helped.
He is ten years old now and he is finally learning how to deal with other people knowing that he has scleroderma. Scleroderma is a tough thing to live with and watch your children go through the changes, but everything happens for a reason, even though sometimes we really do not know why.
The one thing I have learned is to give your child the best moral support and self esteem and they will prevail. They are stronger that we are most of the time.
Take care and God bless.