Should I Be Tested?
The decision to be tested is very personal, and may be one of the most important decisions you ever face. Members of the same family will have different feelings about testing. It is important to respect each person’s feelings. For individuals without symptoms of HD, the main benefit of “predictive” or “presymptomatic” testing is psychological and relate to life planning, since currently there is no medical benefit (for example, early treatment, specific diet, or lifestyle changes), that can slow or prevent Huntington disease. The test results have important implications for many life decisions.
Susan Creighton, a genetic counselor who has been providing predictive testing for over twenty years, discusses the testing process and the decision to be tested.
There are many other online websites and resources which provide information regarding HD in general, support groups in your area, research updates and opportunities to be involved in clinical trials.
We understand that learning that someone in your family has HD can be devastating. It can leave you with questions, concerns, and no idea where to turn next. Find about more about what others have done in your situation – you are not alone.
Family and Friends
Finding out that your loved one has HD, or may develop it in the future is incredibly hard. You may feel concern, shock and anxiety but at the same time want to help and support your loved one.
Learning more about the condition and the testing process can help you understand and prepare for what HD means for both of you now and in the future.