Huntington's Disease

Huntington's Disease

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Duke neurologists use proven methods to diagnose and manage Huntington’s disease; we help people affected by it enjoy a better quality of life. We are North Carolina’s only nationally designated Huntington’s Disease Society of America (HDSA) Center of Excellence, which recognizes expertise in diagnosing and treating Huntington’s disease and emphasizes a cooperative team approach to caring for patients and supporting their caregivers. We provide direct access to providers with movement disorder expertise.

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There are two related drugs that are approved by the U.S. Food and Drug Administration (FDA) to suppress the irregular movements (chorea) that are a hallmark of Huntington’s disease; however, these medications have potential side effects that need to be monitored. Medications to treat cognitive or behavioral symptoms (such as depression, irritability, or impulsiveness) may be used as well.

Physical Therapy

Our physical therapists are experienced in helping people with Huntington’s disease optimize mobility and reduce the risk of falling, especially as the disease progresses. They recommend assistive devices, such as walkers or wheelchairs, when needed.

Occupational Therapy

When Huntington’s disease interferes with the ability to perform everyday tasks, such as getting dressed or walking, our occupational therapists can help people maximize their ability to function independently. Evaluations to assess safety with driving tasks are often performed. 

Speech and Language Therapy

Huntington’s disease can affect the ability to swallow normally. Our speech-language pathologists are experts in testing for swallowing problems. They also help develop strategies to reduce the risk of choking or aspiration pneumonia that can result from this. Our speech-language pathologists can offer techniques to improve speaking or thinking skills.

Clinical Social Work

Our licensed social workers provide direct support to patients and their families, promoting resource-sharing, offering support groups, and providing guidance with disability application, among other support.

Psychiatric Care

Psychiatric symptoms often accompany a Huntington’s diagnosis, and Duke’s network of psychiatric experts are available to help manage and mitigate those symptoms.

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Our neurologists specializing in movement disorders perform a physical examination and conduct a thorough medical and family history to gather information about symptoms. A care team may also perform the following tests or evaluations to confirm a diagnosis and create a care plan.

Genetic Counseling and Testing

Genetic testing can identify the abnormality that is known to cause Huntington’s disease. We review the findings with you and offer additional genetic counseling when needed. 

Cognitive and Behavioral Assessments

Our experts evaluate thinking and behavior, including memory, reasoning, and emotional state. They will establish a baseline status so they can measure changes as the disease progresses. For people who are struggling at work, neuropsychologic memory testing can be key in obtaining disability benefits. 

Movement Assessment

We will examine any balance and walking issues, as well as fine motor movements, to develop a care plan.

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Why Choose Duke

Access to Top Doctors and Innovative Research
Our experts are always striving to improve care for Huntington’s disease. Duke neurologists, neurobiologists, and their associates have recently pioneered breakthrough research suggesting that existing drugs intended for other conditions (like cancer or diabetes) may hold promise as therapies for Huntington’s disease. 

Team Approach
Because Huntington’s disease can affect the body in many ways, our team includes neurologists, psychiatrists, physical therapists, speech-language pathologists, occupational therapists, and social workers who customize a treatment plan specific to your needs.

Support Services
Adjusting to a Huntington’s disease diagnosis or caring for a loved one with the disease can be difficult, confusing, and emotionally draining, especially because there is no cure at this time (although there is hope for a cure or improved treatments in the future). Our social workers get to know you and your family, host support groups, work to find resources in your community, and strive to improve your quality of life, no matter how Huntington’s disease affects you personally. 

Clinical Trials
Duke participates in clinical trials seeking new, more effective ways to manage and treat Huntington’s disease. Our dedicated clinical trial coordinator is available to enroll and guide participants through the process. 

Regional Referral Center
People with Huntington’s disease are referred to Duke from all over the surrounding region, including southern Virginia and northern South Carolina. Our status as a regional referral center speaks to our experience and expertise.

Duke University Hospital is nationally ranked in 10 adult specialties
Best Neurology, Neurosurgery in North Carolina
When it comes to your care, you want the very best. Duke University Hospital's nationally ranked neurology and neurosurgery program was named best in North Carolina by U.S. News & World Report for 2019–2020.
Reviewed: 05/17/2019