Promising cures for Huntington’s Disease have resulted in more genetic testing at Vanderbilt’s clinic, which serves a multi-state region. The rare neurological disease is often viewed as a death sentence, which scares people from even wanting to know.
Chris Brown understands precisely why you wouldn’t want to get tested, even with a parent who has Huntington’s — which effects mood, memory and motor skills. It’s like a combination of Parkinson’s, Alzheimer’s and ALS. He cared for his mother in Memphis.
“It’s such a personal decision. And once you have that information, you can’t give it back,” Brown tells WPLN’s This Is Nashville. “It’s life-changing when you get that news.”
Brown, who is a patient at the Vanderbilt clinic, decided to find out his own risk in 2016, and the news was not good. Having a parent with Huntington’s makes the odds roughly 50-50. He’s now 38 — the age his mom was when her symptoms started.
From This Is Nashville: Living at risk of Huntingon’s Disease
Several high-profile clinical trials haven’t panned out in recent years. Two halted in March of 2021. But they’ve still provided a glimmer of hope, says Dr. Daniel Claassen, a neurologist who directs the center at Vanderbilt. At the center, which is one of just four in the country to receive a level 1 designation from the Huntington’s Disease Society of America, testing increased 40% when the clinical trials began, he says, and have generally stayed at that level — roughly 70 a year.
“There are some folks that will come to us for three or four or five years and decide to get tested then,” he says. “There are others that come in and say I know I want to get tested.”
Many are trying to decide whether to have children and pass on the risk. Still, Vanderbilt keeps the testing totally private — using a pseudonym for the patient and not even putting the results on the medical record.
“One thing we really try to do is to give patients that sense of autonomy and control,” he says, since before long, the disease will likely be in control.