North Carolina Pioneering Care for Huntington’s Disease Patients
Inherited brain disorder affects control of movement, thought and behavior
WINSTON-SALEM, N.C., June 18, 2013 /PRNewswire/ — North Carolina has emerged as a leader in providing care for patients of Huntington’s disease, an inherited brain disorder that affects control of movement, thought and behavior, and leads to death.
While no treatment has been found to stop or slow the progressive loss of mental faculties and physical control from HD, a worldwide network of nearly 100 medical centers known as the Huntington Study Group has emerged to provide clinical treatment for the disease.
In North Carolina, which is home to HD centers at Duke University and Wake Forest Baptist Medical Center, and to a genetic testing center at UNC-Chapel Hill, a Raleigh-based nonprofit known as HD Reach is pioneering efforts to make sure patients and families throughout the state have access to HD care and resources.
“We have a huge state,” says Dr. Francis Walker, a professor of neurology and director of the Movement Disorder Clinic at Wake Forest Baptist. “Not everyone can go to Duke or UNC or Wake every month for treatment.”
In recognition of the work of HD Reach, the Huntington Study Group will hold its 7th Annual Clinical Research Symposium on November 7-9 in Charlotte. The gathering is expected to attract leading scientists and medical professionals from throughout the world. For more information visit:
More than 30,000 Americans have been diagnosed with HD, and at least 250,000 others are at risk of inheriting it from a parent.
And because HD typically results in death 15 to 25 years after onset of motor signs of the disease, people with HD and those at risk of inheriting it often live with a “large burden of psychiatric manifestations,” he says. “It can tear families apart when it becomes a problem.”
Those psychological manifestations can include anxiety, irritability, depression and aggressiveness, as well as subtle changes in the brain that may be generated by the disease even before diagnosis.
HD Reach is trying to change the culture of living with the disease, he says.
Complementing the long-term work of developing new drugs, HD Reach is working to educate patients and families about therapies that can help them live with the disease and cope with its impact.
The disease is “quite rare,” Walker says. “A small group of physicians have seen HD.” So a big challenge HD Reach is trying to address is “helping patients find someone who could provide them with medical care.”
“Our job is to alleviate suffering,” Walker says. “While we’re waiting for a cure, let’s alleviate suffering using a model that is more grassroots.”
“Now we’ve identified the gene that causes HD,” Walker says. “We have a better understanding. Treatment trials are using therapies that are more and more likely to be successful. Everybody is working on that. We have an unseen army.”
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Robert B Butler | PR | www.ncpressrelease.com
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SOURCE HD Reach; Huntington Study Group