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Huntington's Disease Youth Organization

How can I support my friend whose mom has HD?

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

www.hdyo.org

Q. I have a friend whose mom has Huntington’s disease and he has a 50% that one day he will one day develop the disease as well. He is very depressed that within the next ten years he may begin to show signs… what should I say to show him support and help him? We are both attending college so we are very far away so I’m not able to ever see him- we only talk through texting and Facebook.. how can I help him stay calm?

Please help,

Thank you!

Marilyn, 19, USA

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A. Dear Marilyn,

Thank you for contacting HDYO. You have asked what you should say to show your friend support and help him because his mum has Huntington’s disease and he is very depressed that in the next 10 years he may begin to show signs.

First of all I want to stress that living with the risk of HD and worrying about when symptoms may start is very common, so your friend is not alone. If you haven’t already done so I would encourage you and your friend to read our ‘being at risk’ section which discusses common worries young adults have e.g. symptom hunting, fear of wasting time, looking like an affected parent and some of the strategies they use to cope with their risk.

As you probably know the average age of onset for developing HD is mid30s to mid40s so it is understandable that your friend is worried that he may begin to show signs in the next 10 years or so. But I also want to stress that even if someone knows they carry the gene change for HD from a predictive test currently we cannot accurately predict when Huntington’s disease will develop in an individual. The symptoms that individuals have can also vary in families. There can be a lot of myths and misunderstandings about HD so it is really important to get accurate information. I hope the information on this site will answer any questions you and your friends have about HD, but please just ask if there is anything else.

It might also be helpful for you and your friend to know that there is a lot of research being done into HD at the moment, and so there is a lot of hope. If you want to know more about current research we recommend you look at HDBuzz (www.hdbuzz.net).

Another hugely important thing you can do to help, and it sounds you are doing already, is to encourage your friend to talk and share his feelings. Just having someone who listens on a regular basis, someone who is at the end of the phone (or text or Facebook) can be a real support, even if you are hundreds of miles away. You may not think that you are saying the right things, and hopefully some of the information on our site can help you, but just listening and being there can be a huge support.

You have also asked how can you help your friend to keep calm? Whilst having someone you trust to talk to is very important there are also lots of other strategies young people tell us they use to keep calm and manage their anxiety. In general this involves looking after yourself (so exercising, sleeping and eating well are all important) and doing things that help you to relax or stay focussed e.g. running, listening to music, watching a film, keeping busy.

One of the main strategies young adults tell us they use is to get support, whether that is from friends, the HD community or professionals. For example, meeting other young adults in the same situation can be a huge help. You could encourage your friend to look at HDYO, contact his local HD chapter, or you could offer to visit an HD conference with him (friends are welcome) or even do some fundraising together.

Some individuals also decide that they cannot live with the uncertainty and choose to take the predictive test for HD to know whether they carry the changed gene or not. If this is something your friend is thinking about he could make an appointment with a genetic counsellor who would talk through the pros and cons of testing with him (also see our section on genetic testing).

It may be helpful to talk with a genetic counsellor even if he does not want the test because one of their roles is to help people find strategies to manage the uncertainty of being at risk of serious genetic conditions. I also know some young adults who do not want the test, but who go for annual appointments with an HD specialist, for reassurance that they aren’t showing any signs and up to date information.

It can be extremely difficult to know what to say when someone is worried about their risk of HD and you are not in the same boat yourself, but having a good friend who can listen and let you offload is really important. It is also important to know when to encourage someone to seek more professional help if you think they need it, and to look after yourself. I hope this is of some help Marilyn. Please get in touch if you have any other questions.

Best wishes,

Karen