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Talk to me about huntington's disease...

(4 Posts)
Ewe Sun 21-Nov-10 08:59:29

I have had a look at hda website so have the basic facts, a close family membe has recently been diagnosed, she is in her 60's.

Whilst it can't be passed on to me as we aren't blood relatives my (half) brother and sister are potentially at risk. Has anyone been through the testing process? My sister is only 17 so not legally able to request testing for another couple of months but I would like to try and find out as much as I can so that I can support everyone.

Thanks in advance.

Ewe Sun 21-Nov-10 10:28:04


snowmash Sun 21-Nov-10 18:29:48

Did you find [[ edictive-Testing.pdf this factsheet?

It seems to outline some of the issues well, particularly the testing by proxy which some people don't realise (e.g. if someone's aunt develops it, and the niece tests as positive, the mother will have the gene without needing a test).

The life/health insurance issue is important.

Counselling beforehand (so person requesting testing is sure of their reason), and no pressure on from other family members.

Can't say much as I find it a sensitive topic, but unconditional positive regard/support with no pressure on any one option is good.

[I have a different genetic condition, and needed testing as part of my medical care - other family members had very different issues to think about]

Ewe Sun 21-Nov-10 19:10:50

Thanks snowmash, I hadn't actually seen that fact sheet so thank you for the link and so sorry you've got a genetic condition to deal with.

I think it's easier for me to be unconditional and unbiased in my support as it won't impact me it enables me to have a little distance, although of course I am utterly devastated for them all.

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