Huntington’s disease (HD) is one of those rare diseases that prior to diagnosis feels like a coin toss. Will you get it? Will it pass you by? It’s a genetic lottery–meaning if your mother or father has the faulty gene that causes HD, you have a 50/50 chance of getting it.
Decades ago, Huntington’s was greatly misunderstood and there was no treatment for it. So, as the person lost their ability to think, walk, talk, and so on, the only option was for the family to place the family member in an asylum. Patients were misdiagnosed with many different illnesses such as alcoholism and Parkinson’s disease before it was discovered they had HD.
One of the best places to learn about HD is at the Huntington’s Disease Society of America. They publish an informative e-newsletter that lists volunteer and fund-raising opportunities, and they also maintain a home base for Team Hope, a series of walks that are held around the United States every year.
Another resource the HDSA provides is a Support Groups page where you can search state-by-state for a group near you. I believe that HD is one disease where support for family members is vitally important because caregiving can be very isolating. If you can’t find a support group that is conveniently located, HDSA will give you guidance on starting one! Simply contact Anne Leserman, HDSA Community Services Manager at [email protected].
To watch a poignant video about one English family’s journey with HD, click here.
