When most people visualize Huntington’s disease, a fatal neurological disease that causes the nerve cells in the brain to break down, the first thing that may come to mind is involuntary body movements. Medical professionals refer to those movements as “chorea.” Deutetrabenazine is a drug, still under development, but has been granted orphan status by the FDA. It is designed to treat chorea.
Years ago, when the singer Woody Guthrie, was diagnosed with HD, it was thought to be a psychiatric disease, and Woody was duly hospitalized in Greystone State Psychiatric Hospital in Morris Plains, New Jersey. The neurodegenerative disease had eaten away at his mental faculties, and along with the constant twitches and involuntary motions, doctors didn’t really know what to think. The most unfortunate part of HD is it is steadily progressive and life-ending. As with dementia, the patient may no longer recognize family members toward the end of their life, which is incredibly sad. On a brighter note, patients are no longer cared for in a psychiatric setting, but rather in medical facilities where their palliative needs can be met.
HD is hereditary, and the offspring of an HD patient can be a carrier of the gene, and go on to develop the devastating disorder, which usually presents when between the ages of 30 and 60. Conversely, some children don’t inherit the gene, and that’s where Huntington’s ends for that branch of the family tree.
Over the years, the medical profession has gained a greater understanding of the disease, and at least one drug is available to treat chorea; and others, like deutetrabenazine are in the pharma pipeline. Teva Pharmaceutical is hoping they can speed their new drug to market because the need for treatment options is great. The FDA recently asked them to provide more data, but did not request a new clinical trial, so that day may be closer than we think.
If you are coping with Huntington’s disease, or care for a loved one who is experiencing symptoms, you don’t have to go it alone.
