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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 07-10-15, 11:52 AM   #1
Tom B
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Default Tested negative!

I am writing this to try to bring hope to those of you out there that have been touched by HD, specifically those that are considering being tested.

Just over thirteen months ago, my wife was told that her father and uncle both had HD. The news came a week after her mother had passed away, it was an awful time for her. She went to our GP for advice, but he knew nothing of HD. He told her he would make some enquiries and contact her. A few days later he called my wife, after the call she sat me down and discussed the situation with me and our nightmare began. Typical of any Mum, her main concern was for our two children.

We contacted the HDA for advice and everyone we spoke to was fantastic and the information given was invaluable. We met again with our GP and he referred my wife to the genetics department at Addenbrooke's. We waited several weeks for an appointment, the day of which was four months from the day we met with our GP. Those four months were seemed like an eternity.

We met with Dr. Jenny Hague, (who for the next eight months became a lifeline to both my wife and I) and began our counselling. We had four sessions in total, and Jenny covered all the bases, including how to tell my children, the thought of which was in itself heartbreaking.

Three weeks after meeting with Jenny, and four days before my beautiful daughter left home to move to London to start her new teaching job and her new life as an individual, I sat with her and her 'happy go lucky brother' (who was two weeks away from leaving for his final year at university) and through my tears I told them that their Granddad was very ill, and lovely Mum may be touched by this disease, and if so, so might they be. They each handled the news differently, but their reaction (as Jenny predicted) wasn't as bad as I thought.


Three after telling them my wife was tested. Two weeks later my boy left home and my wife and I spent the next two weeks waiting. We met with Jenny for the final time and she told my wife she had tested negative, and our nightmare was over. I cannot describe the joy we both felt, and since that day (a week ago) every emotion has washed over us. My wife had been filled with guilt that she may have passed this disease to the children, I had felt so guilty for having put them through this ordeal for two months. As a parent you want to protect your children and keep the bogey man away, not bring him into their lives, thankfully this particular bogeyman has gone, but he may still be there for you. Don't let him frighten you too much, there is hope!

I know it's easy for me to say as we have had the all clear, but thanks to the counselling we received from Dr. Hague, and the advice from the people at the HDA I felt as if they had prepared us for the worst. We knew that if my wife had tested positive we would not have faced our ordeal alone, the support was already underway. Remember that, YOU ARE NOT ALONE! These people are caring, loving and dedicated and they help you. So if like me (after getting the news) you lay in your bed at night terrified for those you hold dearest in you heart and silently screaming for help in your mind. Help is out there!

I will always stay in contact with the HDA and Addenbrooke's and will help raise funds for their charities, (we planned a 'holiday of a lifetime' if my wife was negative, but we gave the money to their charities instead, it was the least we could do.) and if we can help in any other way, we will.

When it came down to it, it was a coin toss, 50/50, and my wife won. We've won the lottery! I hope and pray that you do too!

Our thanks to all those wonderful people at the HDA, our gratitude, love and admiration to Dr. Jenny Hague at Addenbrooke's, she held our hand every step and our hope and prayers for those of you who have been touched by Huntington's Disease.
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Old 07-10-15, 04:30 PM   #2
jaq
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Default Re: Tested negative!

What a super read .

So glad for you and pleased you are still supporting the wider HD family by fundraising etc .

Jaq x
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Old 07-10-15, 04:32 PM   #3
shiraz
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Default Re: Tested negative!

Ah Tom ....so utterly pleased for you both and so good of you to now come on here and take the time to share your story, your joy and give hope to others. I'd say this is the bestest prezzie you could ever receive, well better than a lottery win Have a great Chrissie and celebrate in style.
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Old 07-10-15, 06:26 PM   #4
banda
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Default Re: Tested negative!

Great to read a good news story...congratulations and value every minute...strange how the advice is similar whether +ve or -ve?? Thank you for sharing....love the rays of sunshine in amongst the c*** but yes there is some good support to be had but it isn't a level playing field. Take care.xx
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Old 07-10-15, 06:47 PM   #5
Melody
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Default Re: Tested negative!

Hi Tom,

A very uplifting story.

I am so pleased that your wife is free of the disease and you and your family can enjoy your lives without that worry.

Take care. x
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Old 07-10-15, 10:19 PM   #6
Dolphin
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Default Re: Tested negative!

Hi Tom

Thank you for sharing your family's experience

It must feel like a roller coaster of a year and I'm so pleased to hear about your wife's result

Dolphin
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Old 08-10-15, 12:53 AM   #7
LECS
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Default Re: Tested negative!

What a truely beautiful message, it is a great reminder that it is possible to be negative just as it is to be positive. I love reading messages of those that are negative it brings joy to my world. Live your lives to the full. Best wishes Lily
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Old 08-10-15, 06:19 AM   #8
Trish
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Default Re: Tested negative!

Thanks for posting your story in here Tom.

Always good to keep things in perspective that the coin can toss in people's favour at times.
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Old 08-10-15, 02:13 PM   #9
Crystal
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Default Re: Tested negative!

Thank you for sharing your own HD story. Many in my own family now 'at risk' as well as those already having been given a 'positive' result and already affected - so I am really pleased to hear of your own family's lovely news. There is always still hope for many .....
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Old 08-10-15, 03:42 PM   #10
Amanda Stansfield
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Default Re: Tested negative!

Quote:
Originally Posted by Tom B View Post
I am writing this to try to bring hope to those of you out there that have been touched by HD, specifically those that are considering being tested.

Just over thirteen months ago, my wife was told that her father and uncle both had HD. The news came a week after her mother had passed away, it was an awful time for her. She went to our GP for advice, but he knew nothing of HD. He told her he would make some enquiries and contact her. A few days later he called my wife, after the call she sat me down and discussed the situation with me and our nightmare began. Typical of any Mum, her main concern was for our two children.

We contacted the HDA for advice and everyone we spoke to was fantastic and the information given was invaluable. We met again with our GP and he referred my wife to the genetics department at Addenbrooke's. We waited several weeks for an appointment, the day of which was four months from the day we met with our GP. Those four months were seemed like an eternity.

We met with Dr. Jenny Hague, (who for the next eight months became a lifeline to both my wife and I) and began our counselling. We had four sessions in total, and Jenny covered all the bases, including how to tell my children, the thought of which was in itself heartbreaking.

Three weeks after meeting with Jenny, and four days before my beautiful daughter left home to move to London to start her new teaching job and her new life as an individual, I sat with her and her 'happy go lucky brother' (who was two weeks away from leaving for his final year at university) and through my tears I told them that their Granddad was very ill, and lovely Mum may be touched by this disease, and if so, so might they be. They each handled the news differently, but their reaction (as Jenny predicted) wasn't as bad as I thought.


Three after telling them my wife was tested. Two weeks later my boy left home and my wife and I spent the next two weeks waiting. We met with Jenny for the final time and she told my wife she had tested negative, and our nightmare was over. I cannot describe the joy we both felt, and since that day (a week ago) every emotion has washed over us. My wife had been filled with guilt that she may have passed this disease to the children, I had felt so guilty for having put them through this ordeal for two months. As a parent you want to protect your children and keep the bogey man away, not bring him into their lives, thankfully this particular bogeyman has gone, but he may still be there for you. Don't let him frighten you too much, there is hope!

I know it's easy for me to say as we have had the all clear, but thanks to the counselling we received from Dr. Hague, and the advice from the people at the HDA I felt as if they had prepared us for the worst. We knew that if my wife had tested positive we would not have faced our ordeal alone, the support was already underway. Remember that, YOU ARE NOT ALONE! These people are caring, loving and dedicated and they help you. So if like me (after getting the news) you lay in your bed at night terrified for those you hold dearest in you heart and silently screaming for help in your mind. Help is out there!

I will always stay in contact with the HDA and Addenbrooke's and will help raise funds for their charities, (we planned a 'holiday of a lifetime' if my wife was negative, but we gave the money to their charities instead, it was the least we could do.) and if we can help in any other way, we will.

When it came down to it, it was a coin toss, 50/50, and my wife won. We've won the lottery! I hope and pray that you do too!

Our thanks to all those wonderful people at the HDA, our gratitude, love and admiration to Dr. Jenny Hague at Addenbrooke's, she held our hand every step and our hope and prayers for those of you who have been touched by Huntington's Disease.


beautiful beautiful beautiful made my heart melt what a wonderful entry to read x the bogeyman can take a run and jump x best wishes to you all
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