Madeleine R. - Quilt Finished in 2006

Born: December 2, 1999

Illness: Juvenile Dermatomyositis

Madeleine R.'s Story

written by mom Connie

In Feb. 2004 Madeleine was diagnosed with juvenile dermatomyositis. It is a very rare auto-immune disease. Some of the symptoms include: progressive muscle weakness, active inflammation of the muscles, muscle pain , muscle atrophy, muscle contractures, fever, rash, fatigue, malaise, irritability, weight loss, difficulty swallowing due to weak muscles, joint pain and inflammation, calcium deposits under the skin (calcinosis), vasculitic ulcers, slowed growth, and mouth ulcers. We keep finding out about more but that is enough!

Because it is so rare there is little research being done. There are no set treatment protocols. They just try different combinations of the same (older) drugs to hopefully get a good response.

Currently there is no cure.