Huntington’s disease is a genetic (inherited) condition that damages the brain over time. This damage and loss of brain cells can affect the ability to think, act, and move. People with Huntington’s disease can have a wide range of symptoms, including uncontrollable movements (known as chorea), problems with planning and memory, and changes in personality and mood. As the condition gets worse, it may get harder to walk safely without falling, control mood and emotions, and care for yourself. Huntington’s disease (HD) is inherited from parent to child, and it is caused by a defect in a gene called the HD gene.
In most cases, the effects of Huntington’s disease are seen in middle age, but symptoms can start in childhood (known as juvenile HD), young adulthood, or after age 65. There is no cure for HD, but there are many treatments that can help with the symptoms. Also, there are clinical research trials focused on treating symptoms, preventing the disease from getting worse, or slowing it down. Because HD symptoms can affect so many bodily functions, patients are more likely to benefit from a multi-specialty care team that includes a neurologist, psychiatrist, physical therapist, occupational therapist, speech therapist, dietitian, social worker, pharmacist, and other medical professionals.
Excellence in Clinical Care
The UAB Huntington’s Disease Clinic is designated as a Center of Excellence by the Huntington’s Disease Society of America (HDSA). UAB is one of only a few U.S. medical centers that is recognized as an HDSA Level One Center of Excellence, which means that UAB offers the highest level of multi-specialty care. This clinic received the HDSA Excellence in Clinical Care Award in 2017.
The clinic offers a unique experience. At each visit, patients with HD and their family meet with a neurologist or nurse practitioner and see multiple other care team members, based on individual needs. This assessment by multiple team members is provided at no additional cost, as part of routine clinic visits. The goal of this clinic is to maximize functional abilities and quality of life for patients with HD and their family throughout their HD journey.
The UAB Huntington’s Disease Clinic team is dedicated to the HD community and often takes part in local community events. Our social worker helps arrange some of these local activities, including support groups and educational sessions. Clinic Director Victor Sung, MD, serves on the HDSA National Board of Trustees and is the chair of its board for 2021-2023.
Excellence in Research
Some of our clinic team members are active in the Huntington Study Group (HSG), which is the largest network of HD researchers in the world. This connection, combined with UAB’s national reputation for excellence, allows us to participate in the latest HD research and clinical trials. UAB patients may be eligible for new medical and surgical therapies for HD and for new clinical and research trials. We encourage you to speak to your provider about current research and clinical trial options and visit the link below for more information.
Excellence in Genetic Testing
UAB offers an HD Predictive Testing Program, which allows people with a known family history of HD to have genetic testing, even when they don’t have any symptoms. We follow the latest HDSA genetic testing guidelines, which include meeting with a physician, genetic counselor, and social worker before having genetic testing, and we take special steps to reduce wait times for this program. If you or a loved one is interested in HD genetic testing, please contact our genetic counselor (Fallon Brewer, MS, LCGC) at 205-996-5698 to learn more or make an appointment.
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