Huntington Disease Lighthouse Families

For HD families ... by HD families
 

Genealogy

Posted by greeneyes 
Genealogy
October 08, 2009 05:30AM
I am "into" genealogy, have been for many years. In doing Stanley's "tree", I have found 14 confirmed pHD's, and this from only four of a possible nine siblings (and their descendants). So anyway, I'm still looking for the rest of the family.....

I'm looking for the surname SPENCE in the Virginia area, with some that moved to New York and possibly Arizona.

Not real sure what to do with the data. So far it seems that this family has a very high incidence rate.(example: Grandma had HD, all 3 of her sons had HD, son # 1 had 2 sons, 1 is pHD, 1 not tested, son # 2 had 1 son, he is pHD, son # 3 had 2 sons, 1 is pHD, 1 not tested)
Re: Genealogy
October 08, 2009 09:52AM
I have traced the HD in my Family back to the Fogals who were in Markham Ontario in 1675 and Germany before that.HD was not described until 18 something so there is no way anyone can trace it and most people died of something else, even my mother for the sake of statistics. It is also in the Pennsylvania dutch area in the US where the Fogals married the Storeys who did not have HD before. The PHD's in my family live a long time and were farmers so walkng in and around a field would burn off the kinetic energy. They probably ate well too

The geneticist you see who does the blood test protocol puts your HD info into a huge HD disease tree. You cannot see that info ever again but it is very important to understand everything about HD.

HD has been in the front of the genetic diseases and we have only had terrible disease descriptions and choices. My grade 8 to 11 high school biology book included the Jenks family as a source of HD. In grade 13 the HD section provided the type of disease it is in 1967 so my biology book was new, as the genome work was still theoretical.

I was having a lot of trouble with the Krebs cycle so decided to focus on the Krebs cycle rather than memorizing the theoretical DNA. Half the exam was the Krebs cycle, the other was producing the DNA.So I got a 50 in the one subject I aced in school.
Welcome to the forum
Dusty
jl
Re: Genealogy
October 09, 2009 06:51AM
Millers, here.......

jl
Re: Genealogy
October 09, 2009 06:47PM
How do you go about finding family members who had HD. I would really like to find out it anyone else in my husbands family had it. I've asked several family members and no one had ever known anyone who had HD.
jl
Re: Genealogy
October 10, 2009 12:39AM
Judy, what I think you're coming up against is that until EXTREMELY recently, there was no definitive test. '93, I think. HD is rare enough that most PHYSICIANS have never seen a case.

Thus, it has been VERY misdiagnosed, in the past.

I knew about HD in my family, only because of "family rumor". No reliable tests and medical records EXISTED before my generation! We knew of HD in my family because of personal observation - and all too familiar recognition of the symptoms.

jl
jl
Re: Genealogy
October 10, 2009 12:48AM
Because of the autosomal-dominant inheritance of HD - it is indeed VERY common in the families where it occurs - although it's quite rare in the world at large.

4 of the 8 children in my father's generation had HD.

2 of the 4 children in MY generation have it.

jl
Re: Genealogy
October 10, 2009 08:17AM
HD can be clearly seen in the smaller caudate. My sisters autopsy in 1978 proved that she had HD even with a bullet in her brain.
On crossing Jordon she took off the skull, looked at the brain and announced that the victim had HD.
jl
Re: Genealogy
October 10, 2009 12:58PM
My father also died from a (self-inflicted) bullet in the brain - but his failure to donate his brain for analysis left his diagnosis up to (often less than accurate!) observation........

jl
Re: Genealogy
October 11, 2009 10:06PM
JudyF

Family "lore" is probably your best bet. Here are some of the terms I was given for the older generations: dementia, St. Vitus dance, insane, crazy,,,,,,,,

but, luckily ( I guess), my husbands grandmother was CONFIRMED as having HD, and she died in 1978. So, that made following generation diagnosis easier.
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