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Huntington's Disease Youth Organization

Are there treatments to improve the symptoms?

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

www.hdyo.org

Q. Is there any treatment that can reverse this slow process or, at least, that can improve the symptoms? And people who have the disease learn to read and write at an older age than the rest of the children or at the same time, but with a patient teacher near by?

My dads symptoms are not nearly had bad as my grandmas symptoms ever were and he’s now 46 years old my grandma was 52 when she passed away not from huntingtons but from cancer she was completely bed ridden tho. What are my chances? I have 1 baby boy and am currently pregnant so I’m concerned for them

Brenda, 15, Brazil

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A. Dear Brenda,

There are lots of parts to your question. I will answer each separately to keep everything clear.

Treatments:

At the present time there are treatments with tablets that reduce some of the symptoms of HD such as depression or chorea. However, these treatments don’t help all the symptoms of HD (for example poor balance or memory loss) and they don’t protect the brain from further damage. That is, the treatments that we can use now are not cures and can’t slow or prevent further deterioration in the health of someone with HD.

The ideal treatment would be to prevent or delay loss of brain cells. Hopefully this would 1) delay or even prevent the onset of symptoms and 2) stop or slow progression of the disease. We don’t have these treatments as yet.

However, as a result of lots of research into why HD damages brain cells scientists have developed treatments that could potentially prevent or delay brain cell loss. These treatments have shown great potential in animals, such as mice, with the HD gene. However, we can’t assume that what works in mice will be effective in humans. Over the next few years trials of these treatments in humans will occur (the first of these will start in 2015). It will take some time and probably more trials to decide if these treatments work and how to get the best value out of them for patients.

For everyone living with HD in their lives the delay in finding effective treatments is very upsetting and frustrating, but the fact trials are being conducted is amazing and indicates how rapidly new treatments are being developed. For the first time there is real hope for the future.

Reading, writing & learning:

If a person inherits the HD gene from a parent, they have the abnormal HD gene from the moment of conception and for the rest of their lives. Typically, symptoms of HD first appear in adults from the age of 30 or more. That is, having the gene is not the same as having symptomatic HD.

Young people and children with the gene who do not have symptoms are normal and can learn to read and write like anyone else. That is, they should be able to read and write at the same age as other children and without extra or special teachers.

There are lots on reasons apart from HD which could mean that a young person learns to read and write later than other children or that an extra teacher is needed. Examples include deafness, blindness or brain damage at birth. These conditions are not related to HD. They are much commoner than HD.

Very rarely a young person under the age of 18 can get HD and so this could affect learning. In that situation there are likely to be lots of other problems such as depression, chorea (extra movements) and poor balance as well as trouble reading and writing.

I hope that these answers are useful to you. All the best,

Andrew