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My friends don't understand the impact of HD

March 25, 2018

Huntington's Disease Youth Organization

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


My friends don't understand the impact of HD

Q. Why when I try mention HD to my friends do they not understand me, or understand how much of an impact it makes on my life?

Ella, Child, UK

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A. A. Hi Ella

Two very good questions, thank you for asking them. You are not alone in finding it difficult to get their friends to understand how life is for you right now due to HD. So many young people in HD families experience the same issues as you. Your friends will not understand HD the way you do, you live HD every day but they do not see this for the most part, and even when they do see HD in your family they won’t understand it – even if you try to explain it. Hopefully you have supportive friends who want to understand. My advice would be to express to them your frustration that they don’t understand what you are experiencing at the moment. From there you need to educate them about HD and this is not easy for people to do. We do some really good what is HD brochures which are made especially for young people, I would be happy to send some to you so you can give them to your friends and it should help them understand the basics of HD. Finally, I would recommend showing them your life at home or wherever you wish they would understand how HD impacts your life. Show them these issues you face thanks to HD. Explain this is how it is for you. If you would like those brochures just email me at matt@hdyo.org

Hope this helps