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Old 04-01-16, 01:05 PM   #1
Rich D
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Join Date: Jan 2016
Location: Fife
Posts: 1
Default At risk

Hi All,

New member here, just found this site today as I'm trying to decide whether to get tested or not. My sister (49) has probably been symptomatic about 7 years, in Feb 2014 she was diagnosed with HD which came as a complete shock as we were both adopted at an early age from the same natural parents and never knew the family history. I'm currently 48 and showing no symptoms, but my wife and I feel we cannot move on with our lives either way without knowing the outcome of an HD test. We also have to consider our two kids (21 & 19) and how the result will affect them. To be honest, I'm scared as hell to get tested!
After much family tracing, I discovered this was passed on by our grandfather to our mother.
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Old 04-01-16, 06:01 PM   #2
Crystal
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Join Date: Sep 2015
Posts: 237
Default Re: At risk

Quote:
Originally Posted by Rich D View Post
Hi All,

New member here, just found this site today as I'm trying to decide whether to get tested or not. My sister (49) has probably been symptomatic about 7 years, in Feb 2014 she was diagnosed with HD which came as a complete shock as we were both adopted at an early age from the same natural parents and never knew the family history. I'm currently 48 and showing no symptoms, but my wife and I feel we cannot move on with our lives either way without knowing the outcome of an HD test. We also have to consider our two kids (21 & 19) and how the result will affect them. To be honest, I'm scared as hell to get tested!
After much family tracing, I discovered this was passed on by our grandfather to our mother.
Hello Rich and welcome to the message board.

Sorry to hear of your own family situation and of your sister's diagnosis. You will have a lot to explore regarding getting testing - many questions and responses from others on the message board who will be going through the same difficult times. Sadly we have all been there in one way or another and will be able to offer you support/advice as you go along your own journey. I understand how scared you are - the world of HD can be a scary place for us all - but many of us will say that knowledge is power and the more knowledge you have and the more understanding of HD, maybe the decisions you will make in the future may become a little easier.
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Old 05-01-16, 12:01 PM   #3
shiraz
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Join Date: Oct 2014
Location: Merseyside
Posts: 887
Default Re: At risk

Hi Rich
Big decisions indeed. I guess one way to look at it is that if you get tested and come back negative then it would take away all the worries you have regarding your own children and they then would not have to face the turmoils of should I get tested or not. In that regard you are like the sacrificial lamb!! Alls I can say is that I wish I had known about hd coz then Hubs would have gotten a diagnosis a lot earlier and a lot of the heartache caused by the mental health changes could have been lessened/addressed.
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Old 05-01-16, 03:33 PM   #4
Melody
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Join Date: Jun 2014
Location: South East
Posts: 341
Default Re: At risk

Hello Rich and welcome to the board, although of course I am sorry you find yourself here.

Getting tested is a huge decision, everyone who has been through it will say the same.

Once you are referred to the Genetics Counsellors, you have several sessions where you can ask questions, voice fears, weigh up the pros and cons of testing etc. If you then decide to test they will take a blood sample, if you decide not to, you can just walk away. Your wife would also be involved (if you want her there) and she could voice any worries, concerns that she has.

I think the main worry in your situation is that you have children. If you don't test I assume you would inform them of their risk. If they decided to test, a positive result would disclose your status as well, unless they kept the result to themselves which wouldn't be easy.

Wishing you all the best whatever you decide.

Take care.
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Old 05-01-16, 06:45 PM   #5
Allan
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Location: Hastings, East Sussex, UK
Posts: 1,155
Default Re: At risk

Quote:
Originally Posted by Rich D View Post
Hi All,

New member here, just found this site today as I'm trying to decide whether to get tested or not ...... I'm currently 48 and showing no symptoms, but my wife and I feel we cannot move on with our lives either way without knowing the outcome of an HD test.
Hi there

I notice that you have a Scotland location. Are you aware of the Scottish Huntington's Association? The HD Specialist Service for Fife is given as:

Whyteman’s Brae Hospital
Whyteman’s Brae
Kirkcaldy
KY1 2ND

01592 647993

Rather than list them all here you might like to trawl through this thread for some relevant information: http://hdmessageboard.com/showthread.php?p=61693#post61693

Best wishes

.
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Old 07-01-16, 07:13 AM   #6
toosh
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Join Date: Jun 2011
Location: North East
Posts: 570
Default Re: At risk

Quote:
Originally Posted by Rich D View Post
Hi All,

New member here, just found this site today as I'm trying to decide whether to get tested or not. My sister (49) has probably been symptomatic about 7 years, in Feb 2014 she was diagnosed with HD which came as a complete shock as we were both adopted at an early age from the same natural parents and never knew the family history. I'm currently 48 and showing no symptoms, but my wife and I feel we cannot move on with our lives either way without knowing the outcome of an HD test. We also have to consider our two kids (21 & 19) and how the result will affect them. To be honest, I'm scared as hell to get tested!
After much family tracing, I discovered his was passed on by our grandfather to our mother.
Hi Rich
Welcome to the MB

A real dilema for all concerned.

We were only made aware that HD was in my husbands family ( his mother had HD) before we had children and by default after his fathers death. Totally wrong in my opinion. Back in those days there was no internet and we had not heard of Huntington's Chorea as it was known then.
The shock of the odds 50/50 of my hubby inheriting the gene was too much. We decided not to have children and bury our heads in the sand
Live every day like it was our last. In hindsight it was the right decision for us. My hubby has two brothers the eldest who had already gone on yo have 2 sons by the time he found out about HD in the family.

He didn't tell his sons and one day his younger son who was 25 by then announced that his girlfriend was pregnant. The good news was very soon snuffed out as they then had to break it to them that he was at risk of HD. Luckily for him he tested negative.
What ever you decide I think if your children don't already know you are at risk perhaps they deserve to know so they can make their own decisions

Wish you all the very best, and remember the odds are 50/50 there are some negative results.
I know what you are going through, the shock of finding out you are at risk is like being hit on the head with a hammer
Sorry I may not have been much help but I think its good to know other peoples stories
Good Luck
Toosh xxxx
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Old 07-01-16, 11:35 PM   #7
Gabby
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Join Date: Jan 2015
Location: Berkshire
Posts: 371
Default Re: At risk

Hi Rich not much I can add as all have given good advice my hubbie has HD inherited from his mother who did not know it was in the family she was already in late stage before she had it confirmed and My hubbie and his sister decided to test I went with him for the counselling His sister lives in Scotland . |It took a while about a year from start to finish . It was very scary but both had convinced themselves they were positive My husbands Sister tested Negative and struggled with the guilt .
Lots to think about , we don't regret testing and it means it gives his daughter the chance to make up her own mind about testing she has decided not to but if wanting children later on how she will go about it either test or IVF etc she is only just 18

Hubbie had no symptoms when tested this was 7 years ago and did suffer with depression from onset of result and death of his mother a year later but we have done a lot of things .. the Bucket list kind of things .. but making memories . He is now early stage symptoms . we do not regret testing but its not easy or right for everyone good luck
take care x
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