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Huntington's Disease Youth Organization

How should I handle my sister being diagnosed with HD?

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

www.hdyo.org

Q. My sister (29) was diagnosed with HD some weeks ago? How can I learn to handle this? How shall I behave when I meet her?

Mani, 18, Germany

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A. Dear Mani,

First of all I’m very sorry to hear about your sister’s recent diagnosis. A new diagnosis of HD in the family can be a very upsetting and difficult time. There is a lot of help and support available not only for your sister but for yourself and other members of the family. You might want to contact your local genetics service – the following link gives contacts in Germany but do let us know if you need any help finding the nearest centre. They will be able to offer some support and signpost you to local services as well as providing information about HD. I’m also attaching a link for the German Huntington’s Disease Association.

HDYO has a forum, which some people find useful in hearing how others have coped in a similar situation. How supported do you feel by friends and family Mani? It is important that whilst you will naturally be concerned about your sister, not to overlook your own needs. It does take time Mani, and I’m sure it all feels a bit strange at the moment

You asked about meeting your sister for the first time. If you can, try not to worry too much about how to behave around your sister. I’m sure she will appreciate you just being yourself when you meet – there is no right or wrong way to be. You might want to take the lead from her, perhaps asking how she is coping with the news. Your own feelings around the diagnosis are very valid too. Once your sister and the family have had time to adjust to the news, you may find that the diagnosis actually helps to move things forward for example access to specialist HD clinic/opportunities to participate in research etc.

Do let us know if we can be of further support here.

Rhona