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Huntington's Disease Youth Organization

Is there any way to slow down HD?

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

Q. “My mother has HD, along with one of my uncles and one of my aunts. My grandfather also had HD but he has passed on. I am unsure about having children because of this disease, and I am also unsure if i ever want to get tested, simply becuase of the emotional scars I have already undergone. So my question is this, if i were to have HD, what can i do RIGHT NOW in my life to help slow down the effects of this disease? Should i perhaps start going to the gym on a regular basis to get a high amount of excercise? Because this is something i have considered. Also, does reading often help? I am honestly scared about having this disease, so i am looking for anything that i can do to help slow the process if i do have it. Any help is greatly appreciated. Thank you for your help.” Maria, 21, USA

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A. Dear Maria,

I can appreciate the stressful position you are in. I hope you can find ways of dealing with your very natural fears which are shared by most young people at risk of HD. With regards to your specific question, I now recommend regular exercise to all my young patients who are gene positive or whose gene status is unknown.

There is now extensive evidence that exercise MIGHT delay the onset off symptoms if you are gene positive. Mice which have the human HD gene develop the disease later when they have the option to have a physically and mentally active life than if their life is un-stimulating and their opportunities for exercise are limited.

There has been one study in humans. This found that if a gene positive person was physically active then the age of onset of HD was delayed by up to 5 years. This study was very hopeful and especially so given that it’s findings paralleled the results of the experiments with the mice. However, it will require several more human studies to be certain if this study was correct. Also, the human study doesn’t tell us how much exercise or what type of exercise is best. What I recommend is that people at risk of HD exercise 3 to 4 times per week for about 20-30 minutes at a level sufficient to puff them out. That is, I don’t recommend incredible amounts of exercise or pushing yourself to the limits. If you do star an exercise program then you should start gently and build up your level of exercise as your fitness increases.

There are lots of other advantages from regular exercise. It’s very good for your health in general (i.e. protects you from diabetes, high blood pressure, etc) and is a very good way of relaxing and taking your mind off your worries. It’s also a good way to socialise. Many young people also feel empowered knowing that they are doing something that might make a difference and that they can exert some control over their lives.

I suspect that using your brain (e.g. reading, going to school, university or college, having interesting hobbies) might also be good for it, but I can’t prove this as there is no evidence one way or another. Again developing interests is also fun and empowering.

You have raised lots of other very deep issues which also trouble many of my patient’s children. HDYO is a great way to get information and see how others in your position are dealing with HD. In Victoria, Australia, where I come from, our HD genetic counsellor, our local HD association and I are happy to help young people work out how they can best deal with HD in their lives without any requirement that they should be gene tested. Are there any local experts or folk living with HD who you could help you?

Andrew Churchyard