Request an Appointment Find a Doctor
Huntington's disease is a genetic disease which causes progressive neuropsychological symptoms, including changes in behavior, thinking and movement. The Huntington’s disease gene mutation is passed through families and affects the functioning of certain nerve cells in the brain causing cell death. Specialists at the Indiana University Health Neuroscience Center have expertise in Huntington’s disease, providing comprehensive evaluation and treatment.
Most people who develop Huntington’s disease have symptoms which begin in their 30s and 40s. In rare cases, patients can develop symptoms as early as childhood. When symptoms begin in childhood, they may resemble those of Parkinson's disease with rigidity, slow movements and tremors.
The IU Health Neuroscience Center team helps patients with Huntington’s disease better manage their condition so they can enjoy life to their fullest ability. Our team of experts provides individualized care through sophisticated diagnostic testing, the most innovative treatments—including clinical trials—and various educational and support services. Our advanced treatment and specialized expertise is highly sought by people from Indiana and beyond. As a provider of the highest level of care for patients with this disorder, we are designated as a Center of Excellence by the Huntington’s Disease Society of America.
Symptoms of Huntington’s disease are varied and may begin with psychiatric issues before movement problems. These issues include depression, obsessive-compulsive disorder, mania and bipolar disorder. Patients may have movement problems, such as voluntary or involuntary motions, and cognitive disorders resulting in the decline in their cognitive function. Juvenile Huntington’s disease occurs when individuals develop symptoms before age 20.
Huntington’s disease is caused by a genetic defect on chromosome 4. The defect causes a part of DNA to repeat more times than it should. When the gene is passed from one generation to the next, the risk increases for developing symptoms at an earlier age. As the disease continues in families, it becomes evident at younger ages.
Indiana has the second highest recorded Huntington’s disease population in the nation. It is estimated that one in 10,000 people in the United States have the disorder. The disease creates a ripple effect because relatives are likely to experience Huntington’s and its varied consequences.
If one of your parents has Huntington’s disease, you have a 50 percent chance of inheriting the gene. If so, you will develop the disease at some point in your life and can pass it to your children. If you do not get the gene from your parents, you cannot pass the gene to your children. Genetic counseling is advised if there is a family history of Huntington’s. Experts also recommend genetic counseling for couples with a family history of the disease who are considering having children.
The average age of onset for Huntington’s disease is between 30 and 50. Everyone who inherits the gene will eventually develop the disorder, and the illness can last 10 to 25 years. It has been diagnosed in children as young as two and adults as old as 80.
Huntington’s disease may lead to:
- Inability to care for yourself
- Inability to interact with others
- Injury to yourself or others
- Increased risk of infection
Depression is common among people with Huntington’s disease, as it causes disability that gets worse over time. It is important for caregivers to monitor for symptoms and treat accordingly. As the disease progresses, the person will need assistance and supervision and may eventually need 24-hour care.
Our highly skilled doctors are experts in diagnosing Huntington’s disease. To confirm the disorder, they rely on the patient’s family history and symptoms as well as a detailed neurological exam. Brain imaging tests, such as a head computed tomography (CT) scan or magnetic resonance imaging (MRI), may show loss of tissue, especially deep in the brain, although imaging is not required for the diagnosis.
If symptoms strongly suggest Huntington’s, your doctor may recommend a genetic test for the affected gene. This test can confirm the diagnosis, and it may be valuable if there is no known family history. People who are not experiencing symptoms but have a parent with Huntington’s disease sometimes choose to undergo presymptomatic gene testing. Before undergoing such testing, we require that the patient see a genetic counselor who can explain the benefits and drawbacks of learning test results. The Indiana University Health Huntington's Disease Center of Excellence includes an experienced genetic counselor.
The goal of Huntington’s disease treatment is to reduce symptoms and help patients function comfortably for as long as possible. There is no cure yet and no way to stop disease progression. The IU Health Neuroscience Center offers a full range of the most innovative treatments, and our highly skilled doctors determine the best course of therapy for each individual.
Medicine can lessen some symptoms of movement and psychological effects. Dopamine blockers may help reduce abnormal behaviors and movements. Other options include antipsychotics, antidepressants, and anti-anxiety and mood-stabilizing medicines. Medicine may evolve over the course of the disease, and some medicines may have side effects that worsen other symptoms. Therefore, personalized treatment goals and plans are reviewed and updated regularly.
Multiple therapeutic interventions can help a person with Huntington’s disease adapt to changes in ability.
- Psychotherapy. A psychotherapist—a psychiatrist, psychologist or clinical social worker—can provide talk therapy to help patients address behavioral problems, develop coping strategies, manage expectations during progression of the disease and facilitate effective communication among family members.
- Speech therapy. Huntington’s disease can significantly impair control of muscles of the mouth and throat that are essential for speech, eating and swallowing. Speech therapists can help patients improve communication by teaching them how to speak clearly and use assistive devices, such as a board covered with pictures of everyday items and activities. They can also address difficulties with muscles used in eating and swallowing.
- Physical therapy. A physical therapist can teach patients appropriate and safe exercises that enhance strength, flexibility, balance and coordination. These exercises can help people maintain mobility as long as possible and may reduce the risk of falls. Instruction on appropriate posture and the use of supports to improve posture may help lessen the severity of some movement problems. When a walker or wheelchair is required, a physical therapist can provide instruction on appropriate use of the device and posture. Exercise regimens can also be adapted to suit the new level of mobility.
- Occupational therapy. An occupational therapist can help a person with Huntington’s disease, family members and caregivers learn to use assistive devices that improve functional abilities.
These items may include:
- Handrails at home
- Assistive devices for activities such as bathing and dressing
- Eating and drinking utensils adapted for people with limited fine-motor skills
The IU Health Neuroscience Center provides a dedicated Huntington’s disease program. Patients can learn about the latest treatment options, participate in clinical trials and join a Huntington’s support group. The program is staffed by neurologists, a social worker, a genetic counselor and nurses specializing in movement disorders.