MARSHFIELD – Receiving a diagnosis of a rare, fatal, incurable genetic disease comes with many unanswered questions for the patient and their loved ones. Jennifer Schermerhorn, human resources business partner manager with the Marshfield Clinic Health System in Eau Claire, says when her father was diagnosed with Huntington’s disease (HD), she searched for local support and resources. “This diagnosis affects the person who is diagnosed, but also their loved ones as this disease is passed on from generation to generation. It’s a challenge to figure out how to navigate what you need to do,” says Schermerhorn.
Security Health Plan’s Employee Driven Corporate Giving Program is helping to bring Schermerhorn’s goal of creating local awareness and support for people living with Huntington’s and their families one step closer to reality. The Security Health Plan donation will go toward community resources and clinical research. “Researchers are actively investigating the genetic mutation that causes Huntington’s and finding ways to lessen the severity of Huntington’s symptoms.
It would be a miracle if there was a cure, but even better treatments to help people would be a success,” says Debbie Zwickey, social worker with the Huntington’s Disease Society of America (HDSA). Each month Security Health Plan awards a $1,000 grant to a different charity or organization that is nominated by a Marshfield Clinic Health System employee. Employees are encouraged to nominate organizations making a positive difference in the community.
Huntington’s disease causes a deterioration of a person’s physical, mental and emotional abilities and is caused by a malfunction in the Huntington’s gene. According to the HDSA, children of a parent with HD have a 50 percent chance of passing the gene on to their children. “Many families are in complete shock when they get the diagnosis. It’s a horrible process when they decide to undergo genetic testing and have to make decisions about their future,” says Zwickey.
According to Zwickey, Hungtington’s is a combination of ALS, Alzheimer’s and Parkinson’s diseases. It often starts with mild cognitive impairment and quickly progresses to wild, jerky movements and rage. Because of the wide range of symptoms, people living with HD rely on multiple resources for support. Schermerhorn reached out to Zwickey to better understand her father’s diagnosis and how it would affect her family. While the HDSA support was extremely valuable, there was something missing. “Having a local support group to share stories and ideas of ways to help our loved ones is so important. There needs to be more support in rural areas, not just in large cities,” says Schermerhorn.
According to the HDSA, most people with HD start experiencing symptoms between the ages of 30 and 50, but children and young adults can be affected if they have the gene. The HDSA estimates there are approximately 41,000 symptomatic people in the United States with HD, and more than 200,000 at risk for inheriting the disease.
Schermerhorn and her family have participated in the HDSA’s Hope Walks to raise awareness for HD and the importance of personalized support. An HD diagnosis means many different specialties are involved – neurology, psychiatry, occupational or physical therapy, and psychology. “Whether it’s figuring out what kind of specialists my dad needs, to talking to my children about genetic testing and family planning, it gets overwhelming,” says Schermerhorn.
According to the HDSA, there are in-person support groups available in Eau Claire, Oshkosh, Madison and Milwaukee, as well as online groups for caregivers. A social worker with the Wisconsin chapter of the HDSA is available to answer questions, provide resources and information regarding grants available for couples concerned about family planning and HD.
