Living with Huntington's
May is National Huntington Disease month. Huntington's disease is a genetic disorder that affects about 30,000 Americans. There are about 250,000 people at risk of inheriting Huntington's.
Huntington's is a neurological disorder that affects cognitive function and has a movement (chorea) component. It is inherited from a parent, with each child having a 50 percent chance of inheriting the disease. My father died when he was 60 years old, and my oldest brother died when he was 61, both from Huntington's.
An older sister and I have Huntington's as well. I had the gene test done in 1993. Since that time, I have participated in several research trials, one of which I am participating in at this time. There is only one FDA drug approved for treatment of one symptom of Huntington's.
This spring, I rode my bicycle 2,940 miles from San Diego, Calif., to St. Augustine, Fla. The trip was 52 days long, and I rode with a group of 33 riders. We averaged 65 miles per day. I did the ride as a fundraiser for the Huntington's Disease Society of America, which provides funding for research, advocacy, patient and family education and support, and education for the medical community.
I was able to raise $2,960 and would thank those who generously donated. If anyone wants to learn more, visit HDSA.org.
Kurt Hougland, Cape Girardeau