Juvenile Myositis: San Diego Mother Fighting for a Cause

I think mothers with a cause have done some great things in this country. They work to attract media attention for different kinds of cancers, childhood diseases, and to enact legislation. They give their heart, their time, and their lives to make things better in the world.

This article is about one such mother who is doing everything within her power to help her child. Her name is Shari Hume and she is the founder of Cure JM which started in San Diego. Her son, Parker, is afflicted with the disease and has spent a good part of his life in and out of hospitals. She turned her pain and frustration into something positive and uplifting. She created the foundation so that people would learn more about the disease. It's a rare disease so they need money to fund research studies and possible new treatments. They schedule events in various cities to raise more money for this needed research. They just raised $14,000 with an Encinitas Jog-A-Thon this week. Each event makes more people aware of these diseases and enables more research.

What is Juvenile Myositis? This term includes Juvenile Dermatomyositis (JDM), Amyopathic Dermatomyositis(AMD) and Junenile Polymyositis(JPM) which are all auto-immune diseases. This means that the body's mechanism for fighting disease turns on itself, attacking healthy cells and tissue. Juvenile Arthritis is another one that is an auto-immune disease.

The symptoms of these diseases vary with each case. Some children are only mildly affected but with many it becomes life threatening. It may take several visits to different physicians to get it properly diagnosed. There may be rashes on the face that are a reddish, purple. The child may develop red, dry skin patches on their knuckles, elbows, knees, and ankles. Their muscles may become weak. There is often fatigue; fever more at night; inflammation of the esophagus causing difficulty in swallowing; and GI inflammation as well. Other symptoms that can be present include vasculitic ulcers and calcinosis.

The disease is diagnosed with blood tests first, then later an MRI and biopsy. There are treatments but not a cure as yet.

What you can do?

Get involved by learning more about these diseases and how you can help the Cure JM Foundation. I am sure they could use volunteers, office help, and donations. Perhaps you have an idea for hosting an event to raise money toward this cause. There may be families out there with children who are showing symptoms, who don't know where to begin. Knowledge means that more children will get an early diagnosis and earlier treatment.

References:

http://www.cbs8.com/global/story.asp?s=11937263http://www.curejm.com/info/jm.htm