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Old 25-09-13, 02:08 PM   #1
vix
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Join Date: Jun 2012
Location: Manchester
Posts: 39
Default 4 out of 6 have tested positive

hi all, just wanted to know if anyone else can relate to our situation. My partners mum has HD, she had 6 children who had a 50% chance of having it. 4 have now been tested and all of them have tested positive, one is awaiting the result and the other has chosen not to be tested. Was curious to know if anyone can relate to our situation. His mum was 1 of 4 children the other 3 are ok. but as far as we know its come threw the family via the men and only been passed to 1 sibling until my partners generation.
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Old 25-09-13, 05:18 PM   #2
dennisw
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Default Re: 4 out of 6 have tested positive

Hi vix,

Sorry to be welcoming you to the board.
Your partner and his siblings have really drawn the short straws, this is pretty much a worse case of how each offspring has their own 50% chance of inheriting.
I have met a family with 2 out of 3 siblings positive.
In our case there are 4 children and 3 grand children at risk, but none tested as yet, and none with symptoms. All are relatively young.

Hope the MB helps you.

Dennis
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Old 25-09-13, 06:16 PM   #3
Cupcake
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Default Re: 4 out of 6 have tested positive

Hello and welcome

Sorry you have this awful disease in your family. Unfortunately the 50% chance does not work like we would think. As Dennis said short straw drawn, the same in my hubby's family, we now know that of his fathers siblings 6 out of 9 had HD.my hubby is one of 3, hubby last to be tested and all positive. In my way of thinking and burying my head in the sand we were going to be ok. Moving on his brother has 3 children and 6 grandchildren at risk none tested, we have 2 children not tested, no grandchildren as yet. My sister in law and I pray every day that the long straw will come out in the next generation, and we may have some luck on our side .

Hope you find this board supportive and take care. X
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Old 25-09-13, 08:33 PM   #4
vix
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Join Date: Jun 2012
Location: Manchester
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Default Re: 4 out of 6 have tested positive

Quote:
Originally Posted by dennisw View Post
Hi vix,

Sorry to be welcoming you to the board.
Your partner and his siblings have really drawn the short straws, this is pretty much a worse case of how each offspring has their own 50% chance of inheriting.
I have met a family with 2 out of 3 siblings positive.
In our case there are 4 children and 3 grand children at risk, but none tested as yet, and none with symptoms. All are relatively young.

Hope the MB helps you.

Dennis
thanks for replying we actually got some good news this evening the other sibling had his result today and hasn't got it (thank god) we have 2 children at risk and there are 2 more children from the other siblings at risk. its heart breaking I new nothing about it till id had my children
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Old 25-09-13, 08:35 PM   #5
vix
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Join Date: Jun 2012
Location: Manchester
Posts: 39
Default Re: 4 out of 6 have tested positive

Quote:
Originally Posted by Cupcake View Post
Hello and welcome

Sorry you have this awful disease in your family. Unfortunately the 50% chance does not work like we would think. As Dennis said short straw drawn, the same in my hubby's family, we now know that of his fathers siblings 6 out of 9 had HD.my hubby is one of 3, hubby last to be tested and all positive. In my way of thinking and burying my head in the sand we were going to be ok. Moving on his brother has 3 children and 6 grandchildren at risk none tested, we have 2 children not tested, no grandchildren as yet. My sister in law and I pray every day that the long straw will come out in the next generation, and we may have some luck on our side .

Hope you find this board supportive and take care. X
thanks for replying n sorry to hear ur news its horrid but a small comfort to no its not just his family with so many of them testing positive. we had some good news this evening with the other sibling getting the result he doesn't hav it
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Old 27-09-13, 11:21 AM   #6
LizS
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Default Re: 4 out of 6 have tested positive

Hi Vix,

I'm really sorry to hear about your family and sorrier still that you had no knowledge of HD until after having your own children. Again and again people tell stories about how HD has been hidden even within families and how people have discovered their risk too late to have made informed choices about family planning. It just shocks, saddens and angers me so much that people will hide the truth of HD to the detriment of their own family and future generations. It's a criminally selfish thing to do, in my opinion.

On the plus side, research into viable treatments and hopefully 'gene silencing' procedures that will make symptomatic HD a thing of the past are moving forwards every day. I've also been told that information is shared globally in HD research, which is unusual because most research into new medicines is done by companies that want to profit from them and so they're very secretive. HD is such a rare condition that there's really no point in research institutions trying to get territorial about what they've learned, so that's a really good thing, in a roundabout way. At a conference I went to some years ago, Dr Ed Wild said that HD is ' the most curable incurable genetic disease.' By this he means that we know exactly what is wrong in HD+ people's DNA, exactly which protein this affects and exactly how that deformed protein affects the brain. There is high hope then, that any breakthrough in gene silencing and similar research done for any reason, will also benefit and hopefully cure HD+ people.

Find easy to understand research news here: http://en.hdbuzz.net/

Like HIV in some ways, HD is not always a death sentence. Many people have treatment for symptoms and live independent lives for a long time. The important thing is to be proactive about your own wellbeing and not to avoid medical professionals like some people do, in the misguided belief that nothing can be done. A great deal can be done, even at the moment when all that can be offered are medicines to regulate mood and control movement disorder. Your brain needs you to 'use it or lose it' so staying mentally healthy and active is as important as physical wellbeing. There are also supplements that can potentially help over the long term, although conclusive studies have yet to be done. Creatine, blueberries and CoQ10 are all supplements that can potentially boost and safeguard your grey matter for as long as possible and try to get some fish oils into your diet too.

Those who have been tested may consider joining the European HD registry (google it). Because HD is so rare, studies and clinical trials have to be conducted Europe-wide in order to get enough participants to make them clinically relevant. This is something that people can do in order to one day hand on more than just hope to future generations.

In short, there is hope - real, tangible hope - and there are ways you can stay well for as long as possible. If you're going to go, go down swinging.

Sorry to write so much
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Old 27-07-14, 09:38 AM   #7
BB
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Default Re: 4 out of 6 have tested positive

hi thats awful for you alll.
It always hard to go through the testing process and then havingto deal with the results after.
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