FAQ's about HD
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.
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.
- aggressive outbursts
- mood swings
- social withdrawal
- involuntary movements (chorea, dystonia)
- difficulties with: speech, swallowing, balance, walking
- short term memory impairment
- decreased concentration
- difficulty organizing
- slower information processing
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.
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 .
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.
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