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Huntington's Disease Youth Organization

School research project questions

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Q. I am currently doing a project on Huntington’s disease for school and I had a few questions concerning the disease.

Firstly, I was wondering if there will ever be a cure for the disease. If so, what do the cures consist of (medications, treatments or a combination of the two)? Are there any cases where people with Huntington live a normal life style (cases where the individual has very mild symptoms of the disease)? Lastly, is there any information that should be said during my presentation to make my classmates more aware of the symptoms and daily life of a person with huntington’s disease?

Thank You So Much,

Camilla

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A. Dear Camilla,

Thanks for this interesting set of questions. I shall answer them as best as I can, although some answers are very complex and probably too long.

1) Will “there ever be a cure”: At present we can reduce the severity of some of the symptoms of HD & improve the quality of life of those with HD & their families. However we can’t cure the underlying disease because we can’t stop the underlying brain damage. Fortunately, there have been many important improvements in our understanding of how the faulty Huntington’s gene causes brain cell damage and therefore symptoms. Based on this knowledge quite a few drugs have been developed that have the potential to protect brain cells from damage. How well they might work in people with HD is still unknown. Over the next few years many of these drugs will be tested scientifically in drug trials. Many drug trials are in planning phase. People with HD will be asked to consider participating in these trials. Participants in trials are “guinea pigs” as the benefits, if any, and the side effects, if any, in humans will be unknown until the trials are completed. All of us working with HD families are very hopeful and excited by what is happening, but finding effective treatments will be difficult and success can’t be guaranteed in the short term.

2) “Are there any cases where people with HD live a normal lifestyle”: The answer is yes and often. I have just seen 20 HD patients today and also caught up with a few of their kids. All the people with HD were living at home and most have good and happy lives. Quite a few still drive a car, safely & legally, and do all the normal things that we all do. That doesn’t mean that they & their family don’t have to work around the problems caused by HD, but doing so is possible. Eventually all people with HD do become very sick, but even then it is still possible to help them and to improve their quality of life.

3) What “should be said during my presentation to make my classmates more aware of the symptoms & daily life of a person with HD”: One of the biggest problems people with HD or their families face is being treated differently from others. That is they face outright prejudice or “even just” the hurt of being treated differently. This is a problem that is also faced by people with a whole variety of other illnesses and disabilities that make them seem different to others. One really good thing that you & your classmates could do for all people who are different in some way is to accept them for what they are and to appreciate their strengths as well as notice their symptoms. If you have any classmates who come from a HD family then treat them as the normal people they are and back them up when they need it and as they need it. In my experience, a young person dealing with HD in their family can never have enough good friends to help them when needed, but they also need the freedom to get the support they need to suit their individual circumstances. That is, they need back up & support, but it has to be what they want & not over the top. Hope these answers might be useful. All the best for your project which sounds a good thing to do,

Andrew