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Genetic disease in family

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Trudes

Trudes Report 28 Oct 2007 21:54

Hi,

My husband died of Huntington's Disease which is genetic condition, passed through a dominant gene. This means that if you have it, one of your parents must have been a sufferer and all their children have a 50% chance of having it. If you are a carrier then you will develop the disease. My husband's mother also died of HD and I think her mother also.

My husband's family came from Co Cork, but I have hit a brick wall when it comes to tracing any of them.

How do other people feel about discussing family conditions with others? Am I expecting too much?

Andrea

Andrea Report 28 Oct 2007 22:15

Hi Trudi,

I think it is totally understandable for you to want to try and find out as much as you can (especially if you have children?). You will know first hand what a terrible disease Huntington's is. Sorry for your loss.

The trouble is I know someone who had Huntington's and people are terrified of it. It may be a case of burying heads in sand but I think some people may be too terrified to look too closely into the genetic link if they aren't showing any symptoms. I'm sure it feels a bit like a timebomb. I would want to know myself though (I think!)

Sorry I can't be much more help. Best wishes with your search.

Lindsey*

Lindsey* Report 28 Oct 2007 22:28

Hi Trudi, I can't imagine what life must have been like for you, there are several H's sites that are specifically designed to help with all aspects ,from early detection etc.
Personally I would want to know if there were any genetic problems in my line I think you can't ignore this one. Even if they were all tested negative , I'm sure all G.r. family would pull out all the stops to help you.

Researching:
For better results please give all the details ,name, date place as you can {pictures by me }

Christine

Christine Report 28 Oct 2007 22:37

Hi Trudy
I am sorry to hear about your husband, I know how hard it will of been for you and your family.My father died of Huntingtons disease Nov 5th, three years coming up. I have a brother just turned 50 who has got it also,its heartbreaking.Hes my dad all over again.
Not all the family wanted to be tested, I was one of the lucky ones, a couple have the gene although its not showing.
I have family that wont talk about it at all.
Take care
Chris

Trudes

Trudes Report 29 Oct 2007 08:21

Thank you everyone for your lovely replies and warm wishes.

Someone has also told me of a medical geneologist who is mapping the disease. Brilliant.

I think the more things are talked about the less scarey they are. Education about these issues is the key.

Genetic research is moving in leaps and bounds and I hope everyone has a good outcome from its progress.

Thank you all again.