Huntington Disease (cont.)
In this Article
- Introduction to Huntington's disease
- What causes Huntington's disease?
- How is Huntington's disease inherited?
- What are the symptoms and major effects of Huntington's disease?
- At what age does Huntington's disease appear?
- How is Huntington's disease diagnosed?
- What is presymptomatic testing?
- How is the presymptomatic test conducted?
- How does a person decide whether to be tested?
- Is there a treatment for Huntington's disease?
- What kind of care does an individual with Huntington's disease need?
- What community resources are available for Huntington's disease?
- What research is being done on Huntington's disease?
- How can I help?
- What is the role of voluntary organizations?
- Where can I get more information about Huntington's disease?
How does a person decide whether to be tested?
The anxiety that comes from living with a 50 percent risk for HD can be overwhelming. How does a young person make important choices about long-term education, marriage, and children? How do older parents of adult children cope with their fears about children and grandchildren? How do people come to terms with the ambiguity and uncertainty of living at risk?
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 able to make peace with the uncertainty of being at risk, preferring to forego the emotional consequences of a positive result, as well as possible losses of insurance and employment. There is no right or wrong decision, as each choice is highly individual. The guidelines for genetic testing for HD, discussed in the previous section, were developed to help people with this life-changing choice.
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.
Is there a treatment for Huntington's disease?
Physicians may prescribe a number of medications to help control emotional and movement problems associated with HD. It is important to remember however, that while medicines may help keep these clinical symptoms under control, there is no treatment to stop or reverse the course of the disease.
In August 2008 the U.S. Food and Drug Administration approved tetrabenazine to treat Huntington's chorea, making it the first drug approved for use in the United States to treat the disease. Antipsychotic drugs, such as haloperidol, or other drugs, such as clonazepam, may help to alleviate choreic movements and may also be used to help control hallucinations, delusions, and violent outbursts. Antipsychotic drugs, however, are not prescribed for another form of muscle contraction associated with HD, called dystonia, and may in fact worsen the condition, causing stiffness and rigidity. These medications may also have severe side effects, including sedation, and for that reason should be used in the lowest possible doses.
For depression, physicians may prescribe fluoxetine, sertraline, nortriptyline, or other compounds. Tranquilizers can help control anxiety and lithium may be prescribed to combat pathological excitement and severe mood swings. Medications may also be needed to treat the severe obsessive-compulsive rituals of some individuals with HD.
Most drugs used to treat the symptoms of HD have side effects such as fatigue, restlessness, or hyperexcitability. Sometimes it may be difficult to tell if a particular symptom, such as apathy or incontinence, is a sign of the disease or a reaction to medication.
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