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Old 24-12-16, 12:37 PM   #1
aef
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Join Date: Dec 2016
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Default 19 with a lot of questions

Hello, I am 19 years old and I am from Greece. My dad has HD (last stage), so I am dealing with this disease almost 10 years now. The truth is that although I have experienced all the stages of HD with my dad, I dont know a lot about the genetic of the disease. I have not discussed a lot about this with my mom, because when I was younger when I tried to ask her some questions about this, she didnt tell me the truth or she hided me some details (I guess she didnt want to make me feel more anxious or sad.)

SO my question is: If 1 parent has the HD gene there is a 50/50 chance of inheriting it. Then If the child inherits it, it depends on the number of CAG repeats inside the gene whether the child will develop or not HD? So if someone says that his test is negative it means that he inherit the gene but has small repeats or that he didnt inherit the gene at all? I know that my questions may sound silly but I am very confused, I am in the stage where I dont know If I want to take the test or not and I am searching more about the disease, the potential of having family etc. Sorry for my Engilsh and thank you for your time. STAY POSITIVEEE
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Old 24-12-16, 04:43 PM   #2
Trish
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Posts: 2,391
Default Re: 19 with a lot of questions

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Originally Posted by aef View Post
Hello, I am 19 years old and I am from Greece. My dad has HD (last stage), so I am dealing with this disease almost 10 years now. The truth is that although I have experienced all the stages of HD with my dad, I dont know a lot about the genetic of the disease. I have not discussed a lot about this with my mom, because when I was younger when I tried to ask her some questions about this, she didnt tell me the truth or she hided me some details (I guess she didnt want to make me feel more anxious or sad.)

SO my question is: If 1 parent has the HD gene there is a 50/50 chance of inheriting it. Then If the child inherits it, it depends on the number of CAG repeats inside the gene whether the child will develop or not HD? So if someone says that his test is negative it means that he inherit the gene but has small repeats or that he didnt inherit the gene at all? I know that my questions may sound silly but I am very confused, I am in the stage where I dont know If I want to take the test or not and I am searching more about the disease, the potential of having family etc. Sorry for my Engilsh and thank you for your time. STAY POSITIVEEE
Hi Aef

Welcome to Message Board

No need to apologise for your English, you have done very well.

Sorry to hear about your dad and how you are now left with a lot of unanswered questions about your own HD status.

People in here could try to help explain, and give lots of different links. However, I think the best thing to do is to steer you towards the HDYO. The link to the website is HERE

Not only is it a good place for getting information and support, because it is an international organisation you can get support in your own language which should make life easier. Hopefully you can also connect with your peer group in Greece and get some extra support connecting and exchanging experiences.
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