GREENVILLE — Sarah Loper is not an average 17-year-old.
The Fenwick teen has organized a benefit concert to help raise awareness of a disease that has ravaged her family.
Huntington’s disease is an incurable disease that affects muscle coordination and leads to eventual cognitive problems and typically shortens life by 20 years. It is also a genetic disease, which means because Loper’s paternal grandfather had the disease, her father has a 50 percent probability of inheriting the disease. Loper’s father has chosen not to have genetic testing for the disease, so as a result, she is unable to be tested herself due to the Health Insurance Portability Accountability Act.
“My dad and his two brothers have chosen to not be tested,” Loper said. “It’s kind of like knowing your own death.”
When asked about whether she would undergo testing if she had the option, Loper was quick to answer “yes.” Because her future plans include getting married and having a family some day, Loper wants to know whether she carries the gene that causes Huntington’s disease. If she is a carrier, she said she would choose to adopt children rather than risk carrying on the disease that has caused her family so much pain and suffering.
Dave Stiekles is with the Huntington’s Disease Society of America (HDSA) chapter in Midland and has served as board president since 2004. According to Stiekles, one out of 10,000 people is diagnosed with Huntington’s, but the number is higher in Michigan. Huntington’s can often mimic many psychiatric disorders.
People moved to Michigan when the state was known for state-of-the-art psychiatric care. This high influx of people with Huntington’s flocking to Michigan for treatment has impacted Michigan’s higher rate of diagnosis.
“Because neurons die off, Huntington’s mimics almost all psychiatric disorders, including manic depression, anger management, hallucinations, and many sufferers lose some inhibitions and take risks,” Stiekles said. “My best friend started off with running lights as they were turning from amber to red and once he started running red lights, he had to stop driving.”
Stiekles involvement with Huntington’s disease is personal, just as it is for Loper. Stiekles’ best friend died of the disease in 2002. He cared for his best friend as his condition deteriorated.
Loper’s undertaking of this event was no small task but she was quick to acknowledge all of the help she has received from family and friends. She wrote a letter about herself and a brief family history and had a brochure created, to distribute to area businesses so the public can help take on her cause. Friends from Loper’s former church were quick to offer their help.
“I worked with two pastors from Greenville Community Church — Pastor Dave Gonzalez and Pastor Paul Spittka — and the secretary from my dad’s work helped to make the brochures,” Loper said.
Several local musicians will perform at the concert from 2 to 7 p.m. Sunday at Greenville Community Church, 6596 Vining Road in Greenville.
Deborah Boyd of the HDSA Great Lakes Region will start the event with a discussion about the disease at 2 p.m.
Cost is $5 at the door and will include pizza donated by B.C. Pizza of Greenville.
More information about Huntington’s disease can be obtained by visiting www.hdsa.org online.