Many questions are common to the HD community. We've tried to list some of the most frequently asked questions and the answers below. As new topics come to light, we'll add information to this page.

What is Huntington's Disease?
Huntington's Disease (HD) is a hereditary brain disorder that slowly robs the affected individual of his/her ability to walk, talk and reason. HD affects about one in every 10,000 Americans and places another 200,000 at-risk to inherit the disease gene. Approximately 30,000 Americans are afflicted. HD affects all races and ethnic groups as well as both sexes.

Facts About HD
Early symptoms may include depression mood swings, forgetfulness and lack of coordination. As the disease progresses, personality changes may appear, along with decreased mental capability, slurred speech and memory loss.

Each child of an affected parent has a 50/50 chance of inheriting the disease. Approximately 200,000 are at risk of inheriting the disease. HD typically occurs in mid-life, between the ages of 30 and 45, but it can strike at any age. The Juvenile form can strike children as young as one.  HD progresses slowly over a 10 to 25 year period.

What are the symptoms of HD?
Symptoms vary greatly between individuals. Many may first experience difficulties with coordination and motor skills, while others are affected cognitively and experience depression, forgetfulness and mood swings. As HD progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, talking, and swallowing become progressively more difficult. Ultimately, the weakened individual can no longer care for him/herself and must rely upon others for help.

Is there treatment for HD?
There is no cure, but current medications enable a much better quality of life for those with HD. Doctors may prescribe a number of medications to help control the emotional and movement problems associated with HD. While medicines may help keep these clinical symptoms under control, there is no treatment at this time to stop or reverse the course of the disease although research for this is underway in 21 countries

Most drugs used to treat the symptoms of HD have side effects such as fatigue, restlessness, or hyperexcitability. Sometimes, it may be difficult to determine if a particular symptom, such as apathy or incontinence, is a sign of the disease or a reaction to medication.

The Physicians Guide to Huntington's Disease , also available in print from HDSA, details helpful treatments and medications that are available now.

Can HD occur without a family history of HD?
Yes, rarely. A small number of cases of HD are sporadic, that is, they occur even though there is no family history of the disorder. These cases are thought to be caused by a new genetic mutation - an alteration in the gene that occurs during sperm development.

What is juvenile HD?
The terms early-onset HD or juvenile HD are often used to describe HD that appears in a young person. Some of those afflicted develop symptoms of HD when they are very young - before age 20. Symptoms can include subtle changes in handwriting and slight problems with movement, such as slowness, rigidity, tremor, and rapid muscular twitching, called myoclonus. Several of these symptoms are similar to those seen in Parkinson's disease, and they differ from the chorea seen in victims who develop the disease as adults. People with juvenile HD may also have seizures and mental disabilities. The disease progresses most rapidly in individuals with juvenile or early-onset HD, and death often follows within 10 years.

Can testing be done for HD before symptoms appear?
Discovery of the HD gene has led to an accurate blood test that is applicable to the majority of people at risk for HD. The genetic testing itself involves donating a small sample of blood that is screened in the laboratory for the presence or absence of the HD gene mutation. Results of the test should be given only in person and only to the individual being tested. Test results are confidential. Regardless of test results, follow-up visits are recommended.

In terms of emotional and practical consequences, not only for the individual taking the test but for his or her entire family, testing is enormously complex and has been surrounded by considerable controversy. For example, people with a positive test result may risk losing health and life insurance, suffer loss of employment, and other liabilities. Persons undergoing testing may wish to cover the cost themselves, since coverage by an insurer may lead to loss of health insurance in the event of a positive result, although this may change in the future.

With the participation of health professionals and people from families with HD, scientists have developed testing guidelines. All individuals seeking a genetic test should obtain a copy of these guidelines. HDSA has information on sites that perform testing using the established procedures and they strongly recommend that individuals avoid testing that does not adhere to these guidelines.

Can testing before birth (prenatal testing) be done for HD?
Testing of a fetus (prenatal testing) presents special challenges and risks and some centers do not perform genetic testing on fetuses. Because a positive test result using direct genetic testing means the at-risk parent is also a gene carrier, at-risk individuals who are considering a pregnancy are advised to seek genetic counseling prior to conception.

Some at-risk parents may wish to know the risk to their fetus but not their own. In this situation, parents may opt for prenatal testing using linked DNA markers rather than direct gene testing. In this case, testing does not look for the HD gene itself but instead indicates whether or not the fetus has inherited a chromosome 4 from the affected grandparent or from the unaffected grandparent on the side of the family with HD. If the test shows that the fetus has inherited a chromosome 4 from the affected grandparent, the parents then learn that the fetus's risk is the same as the parent (50-50), but they learn nothing new about the parent's risk. If the test shows that the fetus has inherited a chromosome 4 from the unaffected grandparent, the risk to the fetus is very low (less than 1%) in most cases.

Another option available to parents is in vitro fertilization (IVF) with Preimplantation screening. In this procedure, embryos are screened to determine which ones carry the HD mutation. Embryos determined not to have the HD gene mutation are then implanted in the woman's uterus.

How does someone decide whether to be tested?
The anxiety that comes from living with a 50 percent risk for HD can be overwhelming. Some individuals choose to undergo the test out of a desire for greater certainty about their genetic status. They believe the test will enable them to make more informed decisions about the future. Others choose not to take the test. They are at peace with being at risk and with all that may entail. There is no right or wrong decision, as each choice is highly individual.

Whatever the results of genetic testing, the at-risk individual and family members can expect powerful and complex emotional responses. The health and happiness of spouses, brothers and sisters, children, parents, and grandparents are affected by a positive test result, as are an individual's friends, work associates, neighbors, and others. Because receiving test results may prove to be devastating, testing guidelines call for continued counseling even after the test is complete and the results are known.

Though once considered a rare disease, HD is now viewed as one of the more common genetic diseases. In the past seven years, there have been amazing strides in research and HD is now recognized as a "model" for other neurodegenerative disorders. The answers that are found for HD may lead to treatments or even cures for diseases such as Parkinson's Disease, Amyotrophic Lateral Scierosis (ALS) and Alzheimer's disease which affect millions of Americans