Interdisciplinary program at VCU cares for Huntington disease patients
May is HD Awareness Month
Wednesday, May 1, 2013
Armed with a team of experts representing various specialties, the Virginia Commonwealth University Huntington Disease Program within the Parkinson’s Disease and Movement Disorders Center helps patients battle this inherited neurodegenerative disease.
Huntington disease (HD) causes a progressive breakdown, or degeneration, of nerve cells in the brain and has a broad impact on a person’s functional abilities, usually resulting in movement, thinking and behavioral disorders. It is most often thought of as a movement disorder, but it also causes personality changes and cognitive decline.
“Combinations of symptoms add up to big impacts on activities, such as work, driving and family functions,” said Claudia Testa, M.D., Ph.D., director of the VCU HD Program, the Joan Massey Chair in Clinical Parkinson’s Disease and associate professor of neurology in the School of Medicine. “Over time, basic daily functions like walking, talking and swallowing are affected. The symptoms associated with HD become more severe over time.”
The disease passes from a parent to a child. Every child of an individual who has HD has a 50-percent chance of inheriting the gene that causes HD. It affects both men and women equally and affects people of all ethnicities.
Currently, no cure for HD exists, but many options are available to manage the symptoms. These include medications that help with abnormal movements. Medications also are helpful for psychiatric symptoms such as depression. Many symptoms are best addressed with a combination of medications and non-medication treatments such as physical therapy, psychology and speech therapy.
“There are many ways to improve a person’s independence and quality of life,” Testa said. “Many people with HD are affected in mid-life, when they have young families and careers. In addition, HD is strongly inherited, so a new diagnosis in the family often puts several people at risk. Our HD program at VCU interacts with the whole family to best help with the impact of HD on the individual and the family.”
The VCU HD Program is an interdisciplinary program providing consultations with numerous types of health care providers. The team consists of a neurologist, neuropsychiatrist, genetic counselor, medical social worker, physical therapist, neuropsychologist and nutritionist.
Information, clinical care and research needs differ across the spectrum of HD. The team at VCU works with patients and their families to create an individualized treatment plan.
Research of HD is an important facet of the VCU program. VCU staff members are involved in international and local HD research projects. The team at VCU also interacts closely with other HD centers in the region in order to connect interested patients and families with ongoing research projects both at VCU and elsewhere.
“We strive to integrate top clinical care with research that advances knowledge in HD. Our group has extensive experience in HD treatment trials,” said Testa, who is currently a co-principal investigator for an international trial on a new treatment for abnormal movements in HD. “As VCU is a new HD program, locally we are starting with observational studies and research on mechanisms behind HD symptoms and progression. As we grow, we will move into clinical trials for future treatments.”
The VCU HD Program is starting up a study of nutrition in HD as weight loss and biochemical changes are part of HD.
“Nutrition may be an area where we can effectively intervene clinically once we better understand HD-related metabolism changes,” Testa said.
May is HD Awareness Month. For more information, visit the HD Society of America website at www.hdsa.org.
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