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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 12-11-14, 09:52 AM   #21
Jameson
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Join Date: Nov 2014
Location: Birmingham, UK
Posts: 3
Default Re: The test

Here is an article about someone who chose not to take a test

Young Tasmanian facing life-changing decision about Huntington's disease test
936 ABC Hobart By Fred Hooper
Posted about 7 hours ago

When Liam Dolbey was 18-years-old he made a life changing decision about his health.

Huntington's disease runs in his family, but he decided not to take a test to find out if he will also develop the condition later in his life.

It was while still studying at high school that Mr Dolbey had the difficult conversation with his parents and he learned Huntington's disease ran in this family.

"All of a sudden, I had this sort of thing that I had to think about, so at the time it was a little bit confronting," Mr Dolbey told Penny Terry on ABC Local Radio Tasmania.

Mr Dolbey said he was proud of the way his parents handled delivering the news he had the Huntington's gene and there was no ill feeling within the family.

What is Huntington's disease?

Huntington's disease is a a genetic neurodegenerative disease that affects muscle coordination
Onset of symptoms typically occurs between 30 and 50 years of age
It then leads to cognitive decline
There is a 50 per cent chance of inheriting the disease from a parent with the Huntington's gene
For information and support for people with Huntington's disease, contact the Australian Huntington's Disease Association (Tasmania) Inc.
"It's obviously not a very easy conversation to have, but they respected my right to be engaged in my own sort of life decisions from that age," he said.

Initially Mr Dolbey said he did not understand the full extent of how the disease would affect him later in life and initially, this played on his mind.

"When I first found out I was quite young and naive and I would do things like drop a plate and think 'oh, do I have the Huntington's disease already?'

"I talked about it a lot with my family about whether or not I should get tested, including my brothers who had the same thoughts going through their heads," he said.

Resources:
http://www.abc.net.au/news/2014-11-1...ngtons/5884826
http://www.scienceclarified.com/Ga-H...Disorders.html
http://singularityhub.com/2014/10/30...gtons-disease/
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Old 14-11-14, 12:17 AM   #22
flobert
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Join Date: Jul 2014
Posts: 174
Default Re: The test

Hi there,

Been a few questions about life insurance recently. I thought you could take out life insurance for up to £500,000 without declaring HD in the family, but I could well be wrong!!! We unfortunately did not before diagnosis.

The other things to bear in mind is take out life insurance and CRITICAL ILLNESS cover...we did, but unfortunately not for a great deal, but that did pay out (after a letter from Meg's consultant) once she was diagnosed.

Check HD isn't excluded, but I don't think your breaking any rules by taking out insurance before diagnosis. Obviously you cannot lie when you apply but I don't think there's a "burden of disclosure" on you, i.e. if the insurer doesn't ask you don't have to tell.

There is probably an insurance expert lurking who can put us all straight...
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Old 14-11-14, 10:40 AM   #23
helen
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Join Date: Mar 2007
Posts: 23
Default Re: The test

I wanted to add that there is information which clarifies some of the insurance questions in a couple of the factsheets (see http://hda.org.uk/hda/factsheets), if you haven't looked at these already.

You might want to look at these factsheets in particular:
Advice on Life Assurance, Pensions and Mortgages
A Young Adults Guide

If you scroll down further on the factsheets page there is a section on 'Factsheets from Other Organisations' and there is a link there to information on the Association of British Insurers regarding insurance and genetic tests which also has some useful information.

There is also some useful information here: http://www.geneticalliance.org.uk/do...-insurance.pdf

Hopefully these will help, but if you want to discuss things any more please contact your Regional Care Adviser or Head Office and you can be put through to an RCA.
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