Huntington's Disease

Our specialists help patients with this rare disease enjoy life to their fullest ability

Huntington’s disease—a rare neurologic disease—results in movement difficulties and neuropsychological changes.

Symptoms arise gradually and can include changes in walking, mood, personality, memory and thinking.

Cause

You inherit Huntington’s disease. This means everyone who has it carries an abnormal number of copies of the Huntington gene. Parents pass this gene to children in an autosomal dominant manner. If a parent has Huntington's disease, each of his or her children has a 50 percent chance of inheriting the condition.

Symptoms

Huntington’s disease is degenerative, meaning as more brain cells are lost, symptoms worsen. Symptoms most often appear between the ages of 30 and 50 and worsen slowly over several decades. Involuntary movements can become problematic. Affected individuals may experience psychiatric problems, including changes in thinking and reasoning, or feelings of depression and anxiety. Huntington’s disease affects the brain, speech and swallowing.

How We Can Help

Our Huntington’s Disease Center of Excellence at the IU Health Neuroscience Center, we employ a multidisciplinary approach to treat and manage your symptoms.. With our Huntington’s disease study group and other research teams, we provide access to clinical trials as well as the latest treatment options. Our research efforts include the National Research Roster for Huntington Disease Patients and Families, which began at Indiana University in 1979. The roster promotes research projects that identify treatments and cures. More than 3,000 families have joined this effort.

The Indiana University Preclinical Neuropsychopharmacology Laboratory studies the neural network dysfunctions of Huntington’s disease to aid in the development of new medicines. This could lead to new therapies that slow the progression of Huntington’s disease or cure it.

The genetic nature of the disease and how it impacts families presents many emotional and interpersonal challenges. For example, as the disease progresses, affected individuals will need to stop working and driving, and rely on family and others for care. We aim to ease symptoms and help establish a plan for care as the disease progresses. We involve patients and families in educational and research opportunities, including an annual symposium with our medical team.

Currently, no cure or treatment to slow the progression of Huntington’s disease exists. However researchers at IU Health and Indiana University School of Medicine continue to make progress towards treatments to slow the disease progression.

Huntington’s disease impacts you and your family in different ways over many years. IU Health neurology experts will guide you and your family toward the best care plans for your condition.

  • Genetic testing: When you are diagnosed with Huntington’s disease, it is possible that other family members will now be considered at risk for inheriting the genetic mutation that causes the disease. We can test family members to see if they carry the abnormal Huntington’s gene.
  • Genetic counseling: If desired, an expert in genetics can talk with you and your family members about the inheritance of Huntington’s disease and about whether or not to pursue genetic testing. You will have the opportunity to discuss the emotional and practical impact on your lives and learn more about the disease and its progression.
  • Medicines: Treatments exist to minimize the abnormal behaviors and movements that come with Huntington’s disease. For example. your physician may prescribe dopamine blockers to reduce these symptoms. Other medicines, like amantadine and tetrabenazine, can help control extra movements.
  • Neurological rehabilitation: When you have Huntington’s disease, you need to maintain muscle control for movements and speech. Our team of physical, occupational therapists, dietitians and others work with you and your family to give you the best quality of life possible.
  • Social worker: A key part of your care team includes a social worker at our Huntington’s disease clinic. The social worker can assist in many different ways to help you access services, apply for disability when you can no longer work and help you and your family with home care or nursing home placement, if needed.
  • Access to clinical trials: As a participant in the international Huntington Study Group, our physicians and patients take part in many multisite research efforts. We also conduct our own research studies with the Indiana University School of Medicine.

Treatment

Currently, no cure or treatment to slow the progression of Huntington’s disease exists. However researchers at IU Health and Indiana University School of Medicine continue to make progress towards treatments to slow the disease progression.

Huntington’s disease impacts you and your family in different ways over many years. IU Health neurology experts will guide you and your family toward the best care plans for your condition.

  • Genetic testing: When you are diagnosed with Huntington’s disease, it is possible that other family members will now be considered at risk for inheriting the genetic mutation that causes the disease. We can test family members to see if they carry the abnormal Huntington’s gene.
  • Genetic counseling: If desired, an expert in genetics can talk with you and your family members about the inheritance of Huntington’s disease and about whether or not to pursue genetic testing. You will have the opportunity to discuss the emotional and practical impact on your lives and learn more about the disease and its progression.
  • Medicines: Treatments exist to minimize the abnormal behaviors and movements that come with Huntington’s disease. For example. your physician may prescribe dopamine blockers to reduce these symptoms. Other medicines, like amantadine and tetrabenazine, can help control extra movements.
  • Neurological rehabilitation: When you have Huntington’s disease, you need to maintain muscle control for movements and speech. Our team of physical, occupational therapists, dietitians and others work with you and your family to give you the best quality of life possible.
  • Social worker: A key part of your care team includes a social worker at our Huntington’s disease clinic. The social worker can assist in many different ways to help you access services, apply for disability when you can no longer work and help you and your family with home care or nursing home placement, if needed.
  • Access to clinical trials: As a participant in the international Huntington Study Group, our physicians and patients take part in many multisite research efforts. We also conduct our own research studies with the Indiana University School of Medicine.

Patient Stories for Huntington's Disease

Huntington Study Group

This organization includes international clinical researchers who seek treatments for those diagnosed with Huntington’s disease.

HDBuzz

This website provides Huntington’s disease research news to patients, written by scientists in easy-to-understand language.

Genetics Home Reference

This service of the U.S. National Library of Medicine offers information and links to additional resources about Huntington’s disease.

Resources

Huntington Study Group

This organization includes international clinical researchers who seek treatments for those diagnosed with Huntington’s disease.

HDBuzz

This website provides Huntington’s disease research news to patients, written by scientists in easy-to-understand language.

Genetics Home Reference

This service of the U.S. National Library of Medicine offers information and links to additional resources about Huntington’s disease.