Huntington's Disease

A disease of uncontrolled movements

Genetic Counseling

Genetic counseling is a system of support that allows an individual to cope with their new diagnosis of a condition. When one is diagnosed with a genetic or inherited disorder, support is suggested to learn how to cope with their new lifestyle, their family history, and new information about their disorder. One example of a genetic disorder is Huntington's Disease. One's lifestyle will change in multiple ways. For example, Huntington's Disease is one of uncontrolled movements. In result, one needs to learn of any lifestyle changes they need to make, medications they can be prescribed, and their family history of their disease. One suggestion for the patient is to continue working in their organized work environment. This allows one to keep organized before becoming disorganized from the disease. Also, a balanced and clean diet is suggested. However, if one hasn't noticed symptoms or signs that they have the disease, they can go through predictive genetic testing. The testing allows one to see their family history of disease. The faulty gene can be found within many blood tests. While going through the many sessions, one should bring a support system including a friend, family member, or other type of support aid to help guide them through what is happening. When one first visits their counselor, they may be asked to answer questions regarding their prior knowledge of their disorder and asking any questions they have. For example, one may be asked whether they know of any family history, how their lifestyle has been impacted, and the idea of their future.


For one's future, they may ask whether they should have children. This topic is tough due to the hardships one would face as an individual once their parent begins to show symptoms and the road to their death. However, one usually tests before thinking about beginning a family. If one were to test negative for the faulty gene, then they won't pass on the gene or chance of Huntington's Disease to their children. However, if the patient tests positive for the gene, future offspring have a 50% chance of inheriting the gene and developing Huntington's. Some individuals decide to not have children because they don't want to pass on the gene. However, others want to have children but without risk. Now this is possible through the new technologies and discoveries of science. Another option is parents carrying the faulty gene, starting a family anyways, hoping to avoid passing the gene down.


Statistics have been estimated to determine the number of people affected by Huntington's Disease. For example, it is estimated that 1 in every 10,000 people are affected by Huntington's Disease. This means that about 30,000 people in the United States are affected by Huntington's Disease. Once one develops the disorder, they are estimated to live about 15-20 years after they begin to show symptoms. When symptoms begin, one is seen as having the faulty gene: HTT. There are chances of developing the disorder is 50/50.


If one needs support for coping with their new found genetic disorder, support groups are available. For example, one can gain support from an HD family member or friend, counselor specialized in genetic counseling, therapist, or group leaders. One support group includes one controlled by Anne Leserman. To contact her, use the email: aleserman@hdsa.org. Another example is received through a website. To join the group, you can go to huntingtons-disease.supportgroups.com. Lastly, another example is one from UC San Diego: School of Medicine. Meetings are located in San Diego, usually consisting of presentations. Otherwise, others can visit counselors, therapists, or relate to friends and family members.