Local moms looking for cure for juvenile myositis

Local mothers are asking you to help them find a cure for juvenile myositis (JM), a rare auto immune disorder.

WASHINGTON (WUSA9) - Local mothers are asking you to help them find a cure for juvenile myositis (JM), a rare auto immune disorder. 

JM is a rare auto immune disorder in which the immune system attacks blood vessels throughout the body causing painful muscle inflammation. 

Simonetta D'Onofrio's son Marco, has JM. He is 13 and was diagnosed with JM four years ago. D'Onofrio first learn about JM when her son was diagnosed with it. 

"Initially he had strep throat. We thought he had a virus. It affected his skin and muscles. He was crying while he was walking up the steps at school. We knew that this was not normal, there was something more," D'Onofrio explained. 

JM was sapping their son's strength. Marco's diagnosis was made after four months.

For Michelle Best it took 18 months to get answers for her son James. He was just 2-and-a-half-years-old.

"His symptoms appeared one by one and slowly. First appeared with a rash and was misdiagnosed with warts. His core muscles fell apart on him; shortly after that he started falling," Best said. 

James would ultimately be diagnosed with juvenile dermatomyositis. The now 13-year old faces more challenges with JM than Marco, but both are responding to treatment.

"It's difficult at times. You have to stay out of the sun and wear sunscreen. You have to be careful where you go and not to get sick," Best stated. 

There is no cure for JM which affects one to two children in a million, and mostly girls. Raising awareness and getting pediatricians to recognize JM when they see it, are goals of this Sunday's first D.C. Walk to Cure JM.

"I would like to see better treatment and I'd like to see pain control. I have a lot of goals and most of it involves research," Best added. 

The one-mile Walk to Cure JM is Sunday, June 4 at The Rio Washingtonian Center in Gaithersburg come rain or shine.

© 2017 WUSA-TV


JOIN THE CONVERSATION

To find out more about Facebook commenting please read the
Conversation Guidelines and FAQs

Leave a Comment