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FAQ's about HD

What is Huntington's Disease?

Huntington's disease (HD) is a hereditary brain disorder that affects approximately 30,000 people in the United States and at least 150,000 at risk for inheriting the HD gene. The symptoms of HD typically progress slowly and may include a movement disorder, cognitive impairment, and psychiatric symptoms.

What are the symptoms of HD?

Three domains are commonly affected: cognitive (thinking), motor and behavior. The symptoms and progression of the disease vary from person to person; even members of the same family may have different symptoms. Some individuals can have mild involuntary movements (chorea) and have more of the emotional/behavioral symptoms or vice versa. The symptoms of HD usually appear during the late 30's to mid-40's, but sometimes children or the elderly can have symptoms.

HD Symptoms

Behavioral/emotional
Motor
Cognitive
  • irritability
  • depression
  • anxiety
  • aggressive outbursts
  • mood swings
  • social withdrawal
  • fidgety
  • incoordination
  • involuntary movements (chorea, dystonia)
  • difficulties with: speech, swallowing, balance, walking
  • short term memory impairment
  • decreased concentration
  • difficulty organizing
  • slower information processing

How is HD inherited?

HD is a genetic disorder that is passed down from one generation to the next. Each child of a parent with HD has a 50% chance of inheriting the gene that causes HD. People who inherit the gene will eventually develop Huntington's disease. Those individuals who do not inherit the gene will not develop the disease, nor will their children. An estimated 10% of all HD patients do not know about HD in their family.

Are research opportunities available to
patients in the Huntington's Disease Center?

The Huntington's Disease Center is an active member of the Huntington Study Group (HSG). The HSG is a group of over 60 clinical centers around the world formed to plan and conduct clinical trials aimed at treatment and ultimately prevention of HD. Individuals and family members at the Huntington's Disease Center at Columbia are invited to participate in these studies. In addition, there are research opportunities at the Huntington Study Group for at risk family members who do not have symptoms of HD .

What does an evaluation cost?

The Huntington's Disease Center is unique in that it does not charge patients for their visits. Patients do have to pay for any additional tests that they require—for example an MRI. Although many people do have private insurance, we discuss entitlements with all individuals and families and make every effort to determine Medicaid eligibility and other benefits.

Is genetic testing available?

The Huntington's Disease Center offers presymptomatic genetic testing for individuals with a family history of HD who may want to know if they inherited the gene that causes HD. When indicated, there is also genetic testing to confirm the physician's diagnosis. The genetic testing program follows the guidelines recommended by the Huntington's Disease Society of America. 

The genetic testing program is designed to help each person examine the risks and benefits of genetic testing for Huntington's disease through extensive counseling. Several visits are required. Issues discussed include the impact of a positive or negative result on the individual and family, and potential insurance and employment discrimination. Genetic testing to confirm the diagnosis of HD is also available with counseling. There is a charge for genetic testing services. 

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Columbia University Medical Center : Department of Neurology : Last updated 27-Jun-2009