[R18] Local children battling Juvenile Myositis recognized at the Statehouse (3/18/2013)

Monday, March 18, 2013

Start Date: 3/18/2013 Start Time: 12:00 AM
End Date: 3/18/2013 End Time: 11:59 PM

STATEHOUSE – State Representative Dave Wolkins (R-Warsaw) brought House Resolution 46 to the floor today raising awareness for Juvenile Myositis, an autoimmune disease affecting nearly 5,000 children in the United States. Katherine Alderfer, a resident of Winona Lake, was in attendance at the Statehouse to hear the resolution alongside many other families whose lives have been touched by Juvenile Myositis.

Katherine traveled to the Statehouse today with her father, Alan, mother, Kristine and her sister, Caroline. Three other children with JM were recognized by the General Assembly today with their families.

“I am inspired by the strength of Katherine and all the other children fighting Juvenile Myositis,” said Rep. Wolkins. “It was an honor to recognize such a courageous young lady today.”

Juvenile Myositis causes the body’s immune system to target and attack the muscles and skin. It results in fatigue, muscle weakness and skin rash. It is a life-altering disease that can range from minor annoyance to chronic pain, an inability to walk, bodily disfigurement and possibly death.

The disease is diagnosed in approximately 1,000 children in the U.S. each year. It generally develops between the ages of 6 and 7, and is twice as likely to affect girls. Juvenile Myositis has no known cure, but symptoms can be treated with corticosteroids, immunosuppressants and chemotherapy. Treatment can be exhausting, in addition to the likelihood of severe side effects.

“Sadly, there is very little government funding and pharmaceutical interest for this disease because it is so rare,” said Rep. Wolkins. “I hope that with the heightened awareness of this disease, a cure will be found so no child has to endure the challenges of Juvenile Myositis.”