Disease Info
What is Huntington’s Disease?

An inherited neurodegenerative brain disorder that may affect movement, cognition, and behavior.

In 1872 Dr. George Huntington, a Long Island physician, described this disorder as “Hereditary Chorea”. Chorea being the Greek word for dance that describes the involuntary movements that may accompany the disease. The history of HD in the Lowcountry can be traced back to early coastal settlers, though many today are recent transplants from other parts of the country. The disease is found worldwide. Generally it appears in mid-life, 30-50, and has a slow progression over 15-20 years. Nearly 10% inherit the juvenile form that progresses faster. In the United States over 30,000 people have HD and over 250,000 are at risk; meaning in the Lowcountry thousands may be at risk for the disease.

A simply blood test is available, and can be performed in the Lowcountry, that will tell you if you carry the HD gene. If your parent has the HD gene you have a 50-50 chance of inheriting the disease. If you have the gene you will develop Huntington’s Disease, though you may remain symptom free for years. Once tested a person risks losing insurance benefits, career advancement, and personal relationships. Currently there is no treatment for the disease, only its symptoms. It is not unusual for a family to NOT know they carry the gene until one family member is diagnosed at which point relatives - children, siblings, cousins, aunts, and uncles – may first learn of their own at-risk status.

In our monthly Lowcountry meetings the real answer to what HD is comes to life. The family that has three generations suffering at once, the young HD woman with children fighting to get Social Security, the family that tests gene free and ends its HD saga, and the family that tests and finds all offspring carry the gene. As our at-risk children run and play together during our social meetings their sweet laughter echoes the true meaning of HD. It is life at its fullest, the joys and the struggles, the never-ending cycle. It just so happens that we belong to a very big family…the Huntington’s Disease family.

Information

Only a couple of decades ago, information on Huntington's Disease was scarce, but in the age of the internet and exciting new research, the onslaught of information can be overwhelming.

Beginners to HD may find a web site such as the HDSA a good starting point with its downloadable publications.  Those hoping to find other HD families may want to look to the HD Lighthouse or the Huntington's Disease Advocacy web sites, for message boards and chat rooms. Joining HUNT.DIS is a good next step.

If you want more detailed information, Jean Miller's website is easily readable and full of valuable information, and many local HDSA chapters have web sites with information of interest not just to their area.

Advanced searches might include going directly to medlineplus or pubmed for research. Along with following some of the national and international news on web sites such as the Hereditary Disease Foundation, Huntington Study Group, or The World Congress on Huntington's Disease.

Local resources range from medical, including three HD clinics within driving distance, physicians and therapists with Huntington's Disease experience, to nursing homes that have taken in HD patients. There are some community and government programs to help disabled persons that may be helpful. Books and articles are available from libraries, including the Lowcountry Huntington's Disease Group's own library, which includes videos.

Lastly, you are always welcome to attend one of our support group meetings or speaker's programs and get to know some of your "extended" Lowcountry HD family to learn firsthand from our experiences.