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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 22-07-17, 06:43 PM   #1
JHM
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Default Waiting for results

Hi All,

My uncle was diagnosed with late onset Huntington's earlier this year after several years of displaying some quite obvious symptoms - only none of us had ever heard of HD until is diagnosis.

His son had a positive diagnosis two weeks ago and although statistically it doesn't make my chances of having it any higher it certainly feels that way.

Although my mother (my uncles sister) did not display any symptoms before she died my brother and I wanted to be tested. My blood sample was taken last week and I should know in around two weeks.

I am finding it a little hard to explain the consequences of a positive result to friends and colleagues. Most are sympathetic but a little dismissive as they don't know anything about HD. I just wanted to post a hello on here amongst people who are in the same position as me and my family and who can empathise with the position that we have found ourselves and/or family members in.

Janis
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Old 23-07-17, 12:58 PM   #2
Trish
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Posts: 2,309
Default Re: Waiting for results

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Originally Posted by JHM View Post
Hi All,

My uncle was diagnosed with late onset Huntington's earlier this year after several years of displaying some quite obvious symptoms - only none of us had ever heard of HD until is diagnosis.

His son had a positive diagnosis two weeks ago and although statistically it doesn't make my chances of having it any higher it certainly feels that way.

Although my mother (my uncles sister) did not display any symptoms before she died my brother and I wanted to be tested. My blood sample was taken last week and I should know in around two weeks.

I am finding it a little hard to explain the consequences of a positive result to friends and colleagues. Most are sympathetic but a little dismissive as they don't know anything about HD. I just wanted to post a hello on here amongst people who are in the same position as me and my family and who can empathise with the position that we have found ourselves and/or family members in.

Janis
Hi Janis

Sorry to hear about your uncle and your cousin testing positive for the gene.

My hubby had HD and there are many in his family who either have the gene or are at risk. Like you say, it's difficult explaining HD to people who have never heard of it.

Are you in the UK? I hope you are getting support as you go through the testing. Maybe the HDA Fact Sheets can help explaining to others the ramifications of having a gene like HD.

I'm sure others will be along soon who identify with what you are going through. Fingers crossed for 'negative' result.
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Old 23-07-17, 05:36 PM   #3
JHM
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Default Re: Waiting for results

Hi Trish,

Thank you for taking the time to read and reply.

Yes, I am in the UK. Scotland to be precise. I've found the days since I had blood taken the hardest, so far. I am convinced I want to know yet dreading the results.

My cousin has taken his diagnosis hard but my uncle seems really non-phased about the whole thing, although I think that can be attributed to HD.

I appreciate that it's not time to worry yet. I think I just need the people closest to me to understand the consequences of a positive diagnosis better.

Janis
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Old 27-07-17, 09:55 AM   #4
Tom B
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Default Re: Waiting for results

Quote:
Originally Posted by JHM View Post
Hi All,

My uncle was diagnosed with late onset Huntington's earlier this year after several years of displaying some quite obvious symptoms - only none of us had ever heard of HD until is diagnosis.

His son had a positive diagnosis two weeks ago and although statistically it doesn't make my chances of having it any higher it certainly feels that way.

Although my mother (my uncles sister) did not display any symptoms before she died my brother and I wanted to be tested. My blood sample was taken last week and I should know in around two weeks.

I am finding it a little hard to explain the consequences of a positive result to friends and colleagues. Most are sympathetic but a little dismissive as they don't know anything about HD. I just wanted to post a hello on here amongst people who are in the same position as me and my family and who can empathise with the position that we have found ourselves and/or family members in.

Janis

I found out my father in law had HD three years ago, as did his mother, brother and sister. My wife went through eleven months of counselling after which she tested negative which was a great relief. It was a tough time as we told our children that there was a possibility they may carry the gene but it all worked out well in the end.

I realise how tough this time is for you and I can only wish you well and we'll keep our fingers crossed for a negative result. I know it's easy for me to say but keep your chin up, everyone on this site is rooting for you!
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