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Can you help me explain HD?

October 11, 2011

Huntington's Disease Youth Organization

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

www.hdyo.org

Can you help me explain HD?

Q. “My friends don’t understand what HD is and I don’t know how to explain it best. Can you help me explain it better?” Tom, 16, Canada

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A. Hi Tom. Thank you for getting in touch via HDYO and asking your question. Many of the young people I currently work with have the same question and just don’t know how to explain HD, as it is quite a complicated disease to explain. Please do not feel alone in this. Firstly, do you feel that you understand HD well enough to attempt to explain it- if you don’t you may wish to look at the sections on HDYO regarding What is HD.

If you feel that you do, then I always advise my young people to make it real and keep it simple. There is no point in saying to someone that HD is a triad of disorders which can affect a person’s movement, emotions and psychiatric symptoms. They’ll look at you as if you are strange! I always advise my young people to link the symptoms of HD to whoever is affected and use this as the basis for the conversation.

It’s best to say things like ‘You know how my mum is really clumsy and forgetful, it’s because she’s got HD, or Huntington’s disease. It’s something that she was born with and affects her brain, but the illness only starts to show symptoms when you get older. It affects everyone differently but for my mum it makes her arms and legs move strangely, she can’t control her anger and if she wants something done it needs to be done straight away. In other people it might make them depressed, or impulsive or unable to control their emotions. Everyone is affected different’.

My top tips for telling friends:-

  • Link symptoms to whoever in your family is affected by HD
  • Use simple language- not medical terms
  • Don’t try and overwhelm them with too much information
  • Mention it in a relaxed manner so as not to scare them, or make them worry unnecessarily about you.
  • If you have any friends in the HD community you could ask them how they have gone about it too. The most important thing is that you feel supported, and even if you regular friends don’t understand HD, you can make friends in the HD community who will- HDYO is a great forum for doing this.

Good luck

Kirsten Walker - HD Specialist Youth Worker