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Huntington's Disease Youth Organization

HD, moving house, stress, facebook, cures and carers

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

www.hdyo.org

Q. 1. We just moved a few months ago. Is this putting more stress on my mom with h.d more than me? 2. My mom has HD she is addicted to Facebook, will her addiction go away? 3. Are they close to finding a cure for HD? 4. What is a carer?

Munchkin, 9, USA

A. Dear Munchkin,

Thanks for your questions.

1. We just moved a few months ago. Is this putting more stress on my mom with h.d more than me?

People with HD can find new situations difficult, so I would imagine moving house would be pretty stressful for her. However, it sounds like you are feeling responsible for your mum’s well being, which is stressful for someone of your age too. I hope that there’s someone you can talk to about how you are feeling.

2. My mom has HD she is addicted to Facebook, will her addiction go away?

Facebook is a pretty addictive sort of activity and plenty of people without HD spend lots of time on it, so it might not be to do with HD. Sometimes though, people with HD can get a bit fixated with one thing but usually this doesn’t stick on the same thing for long.

3. Are they close to finding a cure for HD?

Your final question is about finding a cure for HD. I don’t think we are near to finding an absolute cure for HD. On the other hand we are getting near to the kinds of treatments that could delay the illness starting for years. This includes the kinds of treatments which stop cells from making the “bad” protein and protects cells from damage.

Best wishes

Hugh

4. What is a carer?

Hi Munchkin,

A carer is someone who looks after another person, usually when they are ill. Many people who have HD at some point are looked after by a carer. Carers do lots of different things with the person they look after. Often a carer will help with household chores like cooking and cleaning or wash and dress a person. Carers also do things like spending time with someone who has HD to keep them company or taking someone with HD for a walk.

Lots of young people in families with HD sometimes become young carers, often without realising it – they just want to help their family member. That is what caring is… helping someone.

Take care,

Matt