I would like to hear other peoples views. As you know my wife has HD but something I find strange is that when she was Diagnosed in 2002 the doctor said it was a 50 - 50 chance that she would have HD but since then every member in her family a part from her mother that has been tested has HD.

Recently my brother inlaw's 4 son's were tested (now all over 18 and wanted to know) and all of them have it as well. My sister inlaw was tested positive back in 2002 and tested positive.

I have 2 kids a boy 18 and a girl 21 and they are to scared of being tested because of the test results so far with all of their relatives being positive.

If it's 50-50 you would have thought that at least a couple of them would have a negative result.

My daugther has just broken up with her boy friend of 4 years because he started talking about getting married and having kids, she has decided to persue a career in Pharmacy instead. I am not sure she is doing this for the right reasons but I respect her decision. This may also change if she meets the right guy as well.

Wayne, Well 50/50 means that everyone has a 50% chance of inherating the gene. Every human has 2 huntington genes 1 from their MOM and 1 from their DAD. Thats how they get the 50/50. It all depends on if your parent that has the mutated gene passes it on to their offspring.It's all how the dice roll. Some Familys have just 1 or 2 that end up having the gene, and then there are other familys where the mutated gene raveges them all. Huntington's has destoyed lots of familys and still does today.
I am so sorry that your going through this. It must be very hard to see your children going through this.It might be a good idea to let your children know that they can talk to you about their fears of HD. Alot of times people are left feeling alone and afraid, so just knowing you are there for them if they need to talk might help your daughters cope with HD better. My family has kept HD hidden and never spoken about for along time, until I tested Positive 5 months ago. I have opened up that door and We now talk about it more and people are getting questions answered and fears are being calmed. There is alot of healing going on now. I hope this helps... God Bless Violet

It took me a while to understand this too. Someone explained it to me with flipping a coin and when it came up heads I would then guess that the next time it would be tails. However they made it pretty clear to me that what happened in one coin flip had no effect on what happened in any other coin flip. When I think about it of course that is true. I do not believe in invisible forces that move coins around.


Im sorry for what your family is going through.

Wayne50, your post makes me so angry because it is so sad. I can not wait until we can all throw away that coin. Or be able to say what side it landed on makes no difference because there is a cure. I know that you must be praying like crazy for a cure. Your are not alone. We are all praying too. God bless.

And please don't give up hope. Please let your children know that there are people here that ALL of their children tested negative. It is still just as likely as what happened to your nephews...

Wayne i feel for you and your family. I understand why your daughter did what she did, i have done similar myself in the past, just not on that scale. HD is cruel.

Tc Matt.

[www.hdyo.org]

After my father was diagnosed with HD, I was considering getting married (2nd marriage) and wanted to be tested first. I understand the fear of looking into the future and how HD could possibly impact that. I was tested and do not carry the mutation in the gene.

Both children in my dad's family (my dad and my uncle) had HD. So far, none of the children in my uncle's family have developed symptoms (and they are all reaching 50+), none have been tested. I have one sister who did not get tested at the same time I did. She believed because I would not have HD...that must have meant she would...since it is 50/50. Two years later she was tested and she also does not carry the mutation int he gene.

It really is 50/50. There is hope...and hope for a long life without symptoms as well.

Many prayers and blessings to all of you as you go through this...

Like violet said, they say 50/50 cuz of the gene coming from either the father or the mother - but just bcuz dad or mom carry the gene doesnt mean the son/daughter will get it-- so that said, that takes out the 50/50 and leaves it to chance similar to what another poster said about tossing the coin-- a 50/50 is what it is 50/50.....a toss of the coin is what it is...no percentage values can be placed.

I too wnt through so much when we 1st heard of HD, I was told 50/50--well in my silly head, Once I tested Pos, I figured my sibling should be ok--there are 2 of us--I am pos he should be neg---that didnt happen-both of us are pos w/kids at risk.

I am so sorry to hear about what you are going through and know my thoughts are w/you. Keep communication open and pray we are close to a cure.

DCB
*Living for today*

Hello Wayne,
I think there is much not yet understood about the HD procreation process; no way do I believe it's 50-50. Six youngest of my family in a row and both my daughters. It's almost as though the oldest have a lessor chance of being affected, but once the first HD is set, the remainder will be afffected. The oldest three of my siblings may not have had HD, but they have/had cancer. The oldest three in my first cousin's family may not have had hd, but six or seven in a row (the youngest) have/had hd; I don't believe any of them have/had cancer. My mother did. Bob

With all due respect, Bob - I'm not sure I agree.

The 50-50 thing is merely a statistical likelihood (like the toss of a coin) - certainly not something one can rely on in any way.

My family has actually come out pretty close to the 50-50 statistics - but others have not.

I do NOT believe that one child's HD status has anything at all to do with a sibling's HD status.

Naturally, if one sib is at risk, then the other is, as well.

But I've seen nothing at all to indicate that the inheritance of HD in any way "progresses" as siblings are conceived and born.

For instance, I come from a family of 4 children. The oldest didn't have HD, to our knowledge (we have no way of knowing, since she died in an earthquake). The middle 2 children (including myself) have it. The youngest does not.

JL can I ask, you're pretty open, died in an earthquake?

Thought I'd give my two cents on this one.

I get the whole idea of flipping the coin and how one child's pos/neg wouldn't affect another. That being said, sometimes it seems as if for GENERATIONS, the + side of the coin must have weighed more than the - side.

My mother had 6 siblings. One died in their teens from JHD. Seems people keep telling me that JHD comes from the father's side, but HD ran in her mother's side. Grampa was fine. Of the 6 remaining, my mother was diagnosed first, then a younger brother, and finally a sister who showed no signs and wasn't diagnosed until 69 years old!! Add to that, there's a sister who I really think is HD+ but refuses to be tested because she comes up with some excuse for each and every one of the symptoms. Denial being what it is....

Anyway, my grandmother had 5 siblings. Of the six of them 4 yes and 2 no. Of my great-grandfathers generation there were 10 children. 9 of ten had HD.

My generation however, is another story. There are 18 first cousins and so far not a one are HD positive. They are all in their 40's except my brother and myself. They all seem fine. My brother seems to have some physical signs and he calls it RLS, I choose not to form an opinion until either things get worse with him or he is finally old enough where HD would make sense. He's 23 right now.

I'm just not sure about this 50-50 thing. Maybe the odds are more depending on how strong the gene is. I failed every science class I ever took so maybe genes don't work that way.

Gotta git for now, but I think this is a great topic with many un-unanswered questions.

Is there a study of hd parents after divorce/separation who then have additional children with a non hd person to define the hd lineage? i.e., An hd father has more children with a non hd mother and vice versa.

MPeters: the 50-50 thing is based on the assumption that only one parent carries the gene on only one chromosome. There will however be cases where both parents carry the gene or one parent carries two copies of the gene. If both parents are hd positive then 75% of their children will on average be positive and 25% of their children will carry two copies of the hd gene. 100% of the children of a parent with two copies will be hd positive. Some degree of inbreeding is common in human populations especially in the rural communities of our great-grandparents era. If cousins who share a phd grandparent marry, for example, the chances of their child having two copies is one in sixty-four, a rare not uncommonly rare event. There is also some evidence that hd increases fecundity and those two factors may account for the higher than expected incidence in some family trees.

Remember what I said about failing science??? That would be why. I think I understand what you said. This is another reason that I should donate money to find a cure and not do it myself. I'd probably come up with another cause instead of a cure. lol

In my family, this came from my father, and his mother. His mother had the two, twins, and both ended up with HD. My father was an introvert, despite being a minister, and my aunt was a fireball, and lasted almost 10 years longer than my Dad. Of my Aunt's three kids, one is in mid-late stage HD, and the other two are unknown and not showing symptoms. The oldest is the one with HD. In my family, with 6 of us, four have/had HD, two are negative. I don't know what the gene length is for any of them, and I wish i did. Just because. Mine was 20+21. My brother who tested negative is around there too. Beyond that, I do not know or can't remember what the rest of the generations back dealt with as far as the 50-50. I don't know my grandmother's siblings, if any, and so on. Everyone seems to die early in my family. My grandfather was HD neg, but died from liver problems at the age of 51. My grandmother, HD positive, was around that age too.

I will say that my oldest brother said to me once, when i was trying to get him help, that because three have already been diagnosed, he could not possibly have HD. He was so convincing too, bless him.

I am the youngest, and my neg-HD brother is the second oldest. My mother actually had twins first, but were stillborn.

It has certainly been interesting to read this thread though. I am amazed at how so many in different families end up with HD. I mean, I know I come from a large family by today's standards, but the others here that have so much more is just so hard.

Hugs,

Suzanne

In my family Hd had come from my Nan, everything is sketchy beyond that. My mum has seven siblings, one was negative, my mum was positive and the rest have not tested. None to my knowledge are showing obvious symptoms yet and are all in there 50's?? Even my Mum (51 yrs) with soft symptoms only looks eccentric. My Nan lived into her 70's and walked around and had no chorea, but a lot of cognitive issues and hardly any medication (mind you there wasn't any. So i don't know when she showed symptoms. Even when i ask my family no one is sure as she had a very hard upbringing. I have tested positive and my brother died during the testing process in a hit and run accident. So i have no idea if he was positive or not. I hope not he has two children! I do worry for the rest of the family, especially as i have a lot of cousins, and they have had children also...

Tracie! Of course you can ask. My sister died in the famous 1995 Kobe earthquake.

One of only two Americans to die there.

She was an English teacher in a missionary school - and she lived in that older European-style neighborhoos (Higashinada-ku) which was utterly devastated by the quake.

Ironically - Kobe has virtually no history of earthquakes - unlike Tokyo. She had just returned from a visit with my brother in Tokyo. If she had just stayed 2 weeks longer, she would have survived.

Extremely bad luck!

Goes to show you never can tell........



Edited 1 time(s). Last edit at 08/08/2008 05:38PM by JL.

Oops, wrong thread. Nevermind.



Edited 1 time(s). Last edit at 08/07/2008 04:09PM by remig.

It's a Binomial Proablity Distribution.

Theere was only a 6.3% chance of that happening, all 4 having HD (and vice versa / all 4 NOT having HD.)

The probablity that 2 had it and 2 didn't is 37.5%

Those stats of 4 out of 4 having HD are exactly what happened to my husband grandparents. They had 4 children...all 4 had HD. Two jHD and the others were adult onset.