Huntington Disease Lighthouse Families

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Any advice on where to find family history of possible Huntington's- confidentially!

Posted by nalo 
Any advice on where to find family history of possible Huntington's- confidentially!
May 09, 2013 04:47PM
Help! My wife is displaying a lot of HD symptoms and is very paranoid. I an not aware of any symptoms in other family members - a lot have now passed and I didn't know them. They were unmarried and had no children. Living family members are down on top of me if I dare to talk about anything. How do I go about accessing information about other family members? Any tips? Really need some help on this as my wife is slowly getting worse. Thanks!
Genealogy services offer information on past generations more than those currently living. Privacy laws make it difficult to access information on those still alive ( rightly so). But certainly here in Australia anyone can access past death certificates to see what the cause of death was. And quite a bit of information is available about asylum patients etc. Access to records does differ greatly between countries.

I'll PM you if you want some help looking at family history.
i'm new to this foum. I have done a lot of genealogy research trying to find the path of huntinton's in my own family tree. I would suspect that any death certificate would only show huntington's as the cause of death, only if the coroner decided to put that information on there (if it was known). since the gene test was started in about 1994, it was not a very well known disease that they would have been able to easily identified, let alone put it on the death certificate....

if you know dates of death of relatives that are fairily recent say the last 10-15 years, you might also get a copy of the obituary from the paper (or library). if the family was somewhat open about huntington's, they may have included that information in the obit.

good luck in your search.
Each country and state produces differing amounts of information on death certificates. Huntington's is on my GGrandfather's asylum death certificate from 1929 and on the death certificates of his children who died at home in the 1940's, 50's and 80's. A lot depends on whether the person was in an institution or under the care of medical people who understood and acknowledged HD.
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