Huntington’s disease is an inherited disease that causes certain nerve cells in the brain to waste away. People are born with the defective gene, but symptoms usually don’t appear until middle age. Early symptoms of Huntington’s disease may include uncontrolled movements, clumsiness and balance problems. Later, Huntington’s disease can take away the ability to walk, talk and swallow. It affects movement, cognitive function and behavior.
If one of your parents has Huntington’s disease, you have a 50 percent chance of getting it. A blood test can determine if you have the Huntington’s disease gene and will develop the disease. Genetic counseling can help you weigh the risks and benefits of taking the test.
Although there is no cure for Huntington’s disease, medication can help manage some of the symptoms. They cannot, however, slow down or stop the disease.
Source: NIH: National Institute of Neurological Disorders and Stroke
Why choose Ohio State for the treatment of Huntington's disease?
Center of Excellence: The Ohio State University Wexner Medical Center was first named a Huntington’s Disease Center of Excellence in 2000 by the Huntington’s Disease Society of America and is one of only 50 centers in the country to achieve this distinction. We were chosen because of our state-of-the-art treatment, social and psychological support for patients and their families and contributions to the advancement of education and research in Huntington’s disease.
Dedicated Huntington’s Disease Clinic: In addition to assessments and routine visits, we provide genetic counseling and testing services in our Huntington’s Disease Clinic.
Experience with a Rare Disease: Huntington’s disease affects only about 35,000 people nationwide. Our movement disorders specialists have treated hundreds of patients, giving us familiarity with disease variations and evolution.
Team of Experts: Our resources and expertise for treating Huntington’s disease are unparalleled in central Ohio. Our Huntington’s Disease Clinic team includes:
- Movement disorders specialists, neurologists with fellowship training or extensive clinical experience in movement disorders, such as Huntington’s disease
- Social worker
- Physical, occupational and speech therapists
- Genetic counselor
- Nurse practitioners and a clinic nurse
- Neuropsychiatrist who can help address behavioral issues
- Consultations and coordination of transition of care with a pediatric neurologist from Nationwide Children’s Hospital for those with symptom onset before age 18
Research: We are central Ohio’s only member hospital for the Huntington Study Group, a national consortium of academic centers that offers patients access to clinical trials in search of new and better treatments for the disease.
Physical Therapy Expertise: Our physical therapists specialize in managing movement disorders and are known internationally for their research and work in setting the standard of physical therapy care for Huntington’s disease, particularly in gait (manner of walking) and balance assessment and treatment.Learn more about brain and spine neurological conditions at The Ohio State University Wexner Medical Center.
Diagnosing Huntington's Disease
Following a thorough history and physical exam, our movement disorders specialists typically continue your assessment with:
- Blood testing for a particular gene abnormality associated with Huntington’s disease
- Cognitive assessment to establish a baseline by which to measure changes in thinking processes as the disease progresses
- Behavioral assessment
- Motor assessment to measure the severity of the disease’s impact on motor functions (e.g., eye movement, degree of stiffness, gait or manner of walking, balance and fine motor control)
If you are diagnosed with Huntington’s disease, our genetic counselor specializing in movement disorders works with you to explain your diagnosis and your options for care. She also is available to discuss with your family members the pros and cons of having a genetic test for Huntington’s disease.
Our specialty clinic can manage Huntington’s disease
Being diagnosed with Huntington’s can be scary. To help alleviate fears and manage your disease, we’ve created the Huntington’s Disease Center Multidisciplinary Clinic.
The clinic connects people with the disease and their families with disease experts, including a neurologist, genetics counselor, nurse coordinator, social worker, physical therapist, occupational therapist, speech therapist, dietitian and neuropsychologists, all in one place.
This coordinated care not only helps improve your outcomes, but it also provides you with a strong, consistent support network.
A referral may be required to be seen at these clinics. Talk to your doctor about how to get started.
We have been active participants in multiple clinical trials over the last 15 years, particularly in important trials run by the Huntington Study Group. One trial resulted in helping to get the drug tetrabenazine approved in the United States as the first medication specifically for treatment of involuntary movements in Huntington’s disease. Other recent and ongoing trials are helping to identify and bring new medications to market for treatment of Huntington’s disease.
Our participation in national and international clinical research for Huntington’s disease provides you with access to the latest options in medications, often long before they come to market.
Areas of focus include:
- SD-809 Medication Studies to determine safety and effectiveness of the medication SD-809 in treating chorea (involuntary movements of the limbs and facial muscles) in Huntington’s disease.
- Enroll-HD International Registry Study of Huntington’s disease to gather information globally on large numbers of people who have Huntington’s disease and their family members and caregivers.
- Coenzyme Q10 Study to test the effectiveness of CoQ10 in slowing the progression of Huntington’s disease symptoms. Enrollment closed.
- Creatine Medication Study to test the effectiveness of creatine in slowing progression of Huntington’s disease symptoms.
- Pridopidine Medication Study to test the effectiveness of pridopidine in the treatment of voluntary motor symptoms of Huntington’s disease. Enrollment closed.
- PF-02545920 Medication Study of the safety and effectiveness of the medication PF-02545920 in improving motor impairment in Huntington’s disease.
- Effects of Treadmill Training on Gait and Balance in Individuals with Huntington’s disease to study and examine if people with Huntington’s disease could benefit from therapy using a treadmill.
- Balance and Mobility therapies for individuals with Huntington’s disease to improve walking and decrease falls. Past studies included examining the use of a video game to improve balance and studying which type of walker helps improve safety for individuals with Huntington’s disease.
- Assessment Tools are being examined by our therapists to determine which tools are most appropriate for use in the care and treatment of individuals with Huntington’s disease.
Please bring a written account of anyone in your family who has the disease. Include each person’s relationship to you, the age at which each person was diagnosed (if known), his or her symptoms and medications family members have found to be beneficial. We encourage you to bring a family member or support person with you to each visit.