STATEHOUSE – State Representative Rebecca Kubacki (R-Syracuse) raised awareness for Juvenile Myositis (JM) at the Statehouse today through House Resolution 46. Children with Juvenile Myositis and their families were present from Rep. Kubacki’s district to hear a house resolution alongside many other families whose lives have been touched by Juvenile Myositis. Four children with JM were recognized by the General Assembly with their families.
“As a member of the Governor’s Board of Riley Hospital, I’m honored to have these children here today,” Rep. Kubacki said on the House floor today. “Hope matters; the work that Riley Children’s Hospital does matters. You can’t imagine the feeling that a parent has when a doctor comes in and says ‘we can help you’. I’ve heard countless stories of recovery and success from families whose children have been treated at Riley, and I’m so pleased that these children and their families are here to share their experiences as well.”
Juvenile Myositis, an autoimmune disease affecting nearly 5,000 children in the United States, 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.
“We have many jewels in the city of Indianapolis: the Indy 500, the Children’s Museum, the Indiana State Fair, but the crowning jewel is Riley Children’s Hospital,” said Rep. Kubacki. “Their unwavering commitment to help kids like Madeline in their fight against diseases such as Juvenile Myositis is a remarkable and honorable feat.”