Ok, so I understand everyone at risk for HD has a 50/50 chance of having the gene.

In my family it seems that HD hasn't "skipped" very many of us and most of us are gene positive. In other families I read about, it seems to be the same situation. Is it truly an individual thing or are some families more apt to have most members be gene positive?

Have there been any studies done on families or a survey done about how many actually have the gene?

Anyone willing to post stats about their family would be appreciated. Maybe we can do our own unscientific survey right here.

I'll start:
In my immediate family (including one generation before me) there are 6 at risk and 3 have tested positive. The other 3 have not tested yet.

Kev----

In my husbands family: 6 children: 3 tested pos.( my husband and his identical twins sisters) 1 deceased (melanoma age 31) the other two have not tested. On his father's side( his father died of hd at age 61, one uncle still living with HD in his sixties, doing well and still mobile and living at home)): 5 siblings 2 positive, three have not tested (one is 52 the others in their sixties all with no symptoms)

Kev - my family pretty much followed the 50/50 rule.

But that's just odds. Any family can defy those odds in one way or another.

Those odds come from the fact that the HD-affected parent has 2 copies of the gene to pass on. A normal one, and a defective one. At a the time of conception, it's totally a "crap-shoot" which one is passed on.

It's like observing that since a coin has only 2 sides - odds are 50/50 which side the coin will land on.

The REALITY might be quite different! It may land on heads 100% of the time. It might land on tails 100% of the time.

There's no way of predicting.

My husbands father had hd.He was married 3 times & had 7 children.

First marriage 3 children,1 postive(female),1 negative(female) & 1 not tested(male).

Second marriage 2 children(1 is my husband & his sister)both tested negative.

Third marriage 2 children 1 postive(male) & 1 not tested(male)

my wifes father had hd

out of 5 children 4 have hd, the youngest has not shown any symptoms.
no cag testing
the age of onset varied
M30
F50
F20
F40
M?(30s)

Kev-
2/2 my mom and her sister both positive rec'd the gene from their mom
1/1 my cousin who tested was positive
5 others (including me) who have not yet tested

Everybody who has tested so far 3/3 100% in my family has been positive.
De

I have pointed this out before but a sampling here would not be a good indicator of family trends. Obviously families who have a generation who have had all children spared would no longer need support. So they are not represented. Likewise very seldom hit families may not be well represented as the support they need might be less because they have strong families still in tact. As the families become more and more stricken the need for outside support would grow and thus turn up here. So I believe we would get a skewed view of what happens to families from this board. Aside from that the sample is way too small even if every poster answered. I think the best that can be done is an extrapolation from existing data. But hard data sometimes overturns that. I would just say it is best to stick to the 50% chance per individual and realize for every hard stricken family there is probably a lesser stricken one but that is just luck of the draw for now. I am not sure what good having hard data on this kind of thing might do but it would be costly and time consuming. Some things just have to be left in the "I wonder" column.



Edited 1 time(s). Last edit at 09/04/2007 12:45AM by Eric.

And that is why I chose to say it was an unscientific survey. No one was required to answer.

I do understand your point about those who may not be represented here. That is valid and good to keep in mind when reading replies.

I suppose my post came from a sort of desperate search for hope in own situation. My family seems to be hit hard by this and has left no one unaffected thus far.

Thank you for your input and honest concern.

I know Kev. My wife's family was hard hit also up to this point. So I tried to guess what the odds are for the boys. Are my kids actually more at risk because this family is hit harder? Or are they less at risk because the odds say this has to right itself soon? As near as I can tell it's still 50/50. It's fine for people to share when things are tough for them. I get that you know it's not a scientific poll. I have seen people draw, more than likely, wrong conclusions from things like this. I just don't want you to feel like you have a more "cursed" family than the next one. I don't think there is a need for anyone to feel that way. You said three are untested. It is possible that all of them are negative and the statistics will hold true for your family. I sure hope so. I just hate for people to worry beyond what they need to is all. I hope you don't spend too much time doing that. Easier said than done sometimes. Obviously I went through the same thought process myself. I think we all do that from time to time.

Funny but sometimes the opposite happens too. They think that since the majority of the family escapes, that it is safer to have kids or that the ones they do have are safer. Probably no more justified than what we have felt in reverse. I think we just get what we get. It's 50% across an entire population but random beyond that. I don't think that they would ever be able to say this family always will have a 60% chance...this one a 40%...this one 20%...this one 80%. I think the random option is the best way to look at it. For you and I it gives us hope for those who are untested... for those who have family less affected it keeps them grounded to the reality of what might occur.

I think that's wise, Eric.

My experience:
My great grandmother died of HD at 87, no knowledge before her.
My grandmother in end stages at nursing home, out of her 3 sisters 1 positive (at home in end stage)(3 children at risk 2 grandchildren at risk and 1 great grandchild) 1 negative and one unknown, her brother is positive( no decendants)

Then my mom(I know she is positive because I was tested) My sister commited suicide so we are not sure about her(she left 2 at risk daughters)I am positive with 4 at risk boys and 1 at risk daughter)(I am educating my children about all the risks of having children until they get tested, I think they do want to get tested when we have the money. Too bad it is so expensive especially with a big family like mine!My mom's brother at risk (2 male children at risk).

The sad thing about it is that no one is dealing with the disease until it starts. No one is thinking about the children they are having and the long term effects for them. They are country people and don't have internet they have so much misinformation about the disease as I found out a couple weeks ago when I visited them. One uncle was worried he might be at risk even though his mother was 89 with no sym. I put his mind at ease with that. But even the docs that are treating the disease know so little yet say so much, that is not accurate!
How can we ever beat the ignorance or lack of knowledge about this disease!! It really frustrates me! We see many disease on talk shows in the news every where but seldom HD and when it is mentioned I think people are just puzzled!
Sorry for my rant!
Melissa Barnes

ERIC Wrote"Funny but sometimes the opposite happens too. They think that since the majority of the family escapes, that it is safer to have kids or that the ones they do have are safer. Probably no more justified than what we have felt in reverse. I think we just get what we get. It's 50% across an entire population but random beyond that. I don't think that they would ever be able to say this family always will have a 60% chance...this one a 40%...this one 20%...this one 80%. I think the random option is the best way to look at it. For you and I it gives us hope for those who are untested... for those who have family less affected it keeps them grounded to the reality of what might occur."


Very well said Eric, and sadly it still continues, even with positive test results and overwhelming proof what possible comfort can a Phd gain from this denial,and forcing family members to abide with their denial in order to communicate with them, many times in the past I have had telephone conversations abruptly ended because I mentioned the Taboo word.

You Give Good Counsel Eric

Ron C.

ok,

why dont we do an informal survey like this: WHOS FAMILY ON THIS WEB SITE, HAS NOT BEEN HARD HIT OR RAVAGED BY HD?
kev, anyone reading back along the forum, cant help but notice that almost everyone has stories of the family members they have either lost, or are concerned about or caring for...
and it is a valid observation. and one that im sure most new people have figured out for themselves. it would seem that more than 50 percent of people in any given family are getting it, but as was said there are no solid numbers.
but either way kev, this is one thing i really do believe, i think we are within a couple of years of some good medical help coming our way, so lets not let the odds screw with our heads.



Edited 2 time(s). Last edit at 09/04/2007 05:52PM by skmf.

My mom died from HD hard to get a read on her sibilings. There are four of us kids, two with and two at risk.

Teresa

My family history for the previous generation is nil.

we are pretty sure that it was my dad that had it. but at the time he died we knew nothing about HD but my mom never showed any symptoms, but she was 75 when she died in a car accident, so it could have been her. but statistics says it was dad.

his family
2 siblings 1 with 10 kids 1 with 3, no one ever tested. ? on how many grandchildren

my family.

11 girls and 5 boys

1 has 5 no one tested 8 grandchildren none tested 1 ggc.
1 has 3 not tested ? on grandchildren
1 has 5 shes pos, but only one tested she was positive.7 grandchildren all at risk 2ggc. all at risk
1 has 3 none tested 4 grandchildren all at risk
1 has 3 he's pos. 1 pos 2 neg 2 grandchildren 1 at risk
2 died in infancy
1 has 2 none tested 6 grandchildren all at risk
1 neg
1 pos 1 not tested 2 grandchildren at risk
1 not tested 3 children 1 grandchild all at risk
1 not tested 2 children 1 grandchild all at risk
1 died at 39 not tested but symptomatic no children
1 pos 2 children 4 grandchildren all at risk
1 not tested 2 children 2 grandchildren all at risk
1 not tested 2 children at risk

out of 9 tested 6 pos 3 neg so far.


we don't know how many other families could have it they are scattered all over, and lost touch.

Loretta