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Hungtingdon's Disease: You can get tested, but there is no cure

Janice McCartney (43), from Co Armagh, tells how she lost her father George Heatrick (58) to Huntingdon's Disease six years ago. She and her two sons, Josh (20) and Jake (15), have not been tested for the disease

Family support: Janice McCartney (left) with her cousin Helen Hawthorne who has Huntingdon’s Disease
Family support: Janice McCartney (left) with her cousin Helen Hawthorne who has Huntingdon’s Disease
Generous soul: Janice McCartney’s father George with her son Josh

By Linda Stewart

My dad was only 58 when he died with Huntingdon's Disease six years ago. It's a disease that shuts down your whole body over time.

It's an awful disease - it's like having motor neurone disease, Parkinson's and MS all together, like those three diseases all in one.

We looked after him ourselves. Back then there was so little help for people with it. It's so hard looking after somebody and watching them deteriorate and the brain just going and going all the time.

My granny had it first and out of a family of seven there were four of them with it. If your parent has it, you have a 50:50 chance of having it.

It eats away at your brain and your balance would go, and your speech. Everything shuts down slowly and at the end you can't even swallow. People can get aggressive as well as depressed. It's the worst disease ever. My daddy couldn't talk to us for the last year and a half. He loved going to Nutt's Corner on a Sunday and he was such a kind, generous person - he would have given you the food out of his mouth. To see him like that was so hard.


My brother was tested and he hasn't got it. But my sister and I haven't been tested. You can get tested for it if you want, but there is no cure and nothing they can give you to slow it down. I am at the age now where the signs would probably be starting. I feel you should live every day as it comes. It's always on your mind. If you were tested it would be like getting a life sentence. You have to live in hope that there would be a cure, but there is so little help out there for people with Huntingdon's.

Sometimes my son Josh thinks he wouldn't mind getting tested, but at the same time he's young and he needs to go and enjoy life. It would be hard to get health insurance if you wanted to go and travel. So he's better not knowing - but everybody has their own idea about getting tested.

Daddy was only bad for a couple of years, but it was so hard, especially for mum who was looking after him 24/7. He was only 58 - this is when he should have been enjoying his grandchildren."

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