Huntington’s Disease Questions and Answers
I just learned I have HD in my family -what is it exactly?
HD is a genetic disease, which means it is inherited between family members, but only one parent needs to have the genetic disease
mutation to put the children at risk. It is a progressive neurological disease, a disease of the brain in which a sub-section of the brain,
the striatum, is lost slowly over time. This means that the disease will start differently in different people, at different times. For some,
the disease will first affect personality and relationships with people, for others, there will be a problem with movement (chorea). HD
continues to develop with age and gets progressively worse, eventually requiring convalescent care.
If my parent has HD, what is my risk?
If one parent has HD, the risk to their children is 50%, for each child.
How accurate is the test?
The test is a genetic test that directly examines the DNA sequence of the at-risk person. It is very definitive.
50% risk, so if I have two kids, one will have HD and one will not?
No, the 50% risk is for every child. Every child has a 50/50 chance.
Should I get tested if I’m at risk?
This is a personal decision to be discussed with your neurologist and family.
I know I’m gene positive -what do I do now?
Gene positive means symptoms my take decades to appear. There is currently no treatment for HD, but it is well known that people
unhealthy for other reasons will advance their HD faster than healthy people. This means no smoking, drinking, substance abuse, and
physically active people can have less severe HD.
What about clinical trials?
Trials are being conducted worldwide for new drugs, or new applications of known drugs. Also, as important, studies are
being carried out for HD.