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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 09-08-17, 11:39 AM   #1
stacey88
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Join Date: Aug 2017
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Default Trying to work out my risk, really scared

Hi all,

This is my first post so bear with me :)

My great-grandmother died from HD when she was in her 50s. I only know this because of an old letter my mother found. Nobody in my family has ever spoken about it. I found out about 10 years ago, and didn't give it much thought, but I am now pregnant and it is really playing on my mind.

I am 30 years old, my mother is 50 years old and my grandmother died last year at 68 years old from a blood infection. None of us have/had symptoms, nor have any of my aunts (aged 45 and 47). My doctor said I am low risk, and I should go and live my life! I wouldn't even qualify for the test on the NHS because my risk is less than 25%, and I'm not sure I'm brave enough anyway.

However, I now keep reading about how some people don't get symptoms until late 60s or more, and I keep thinking 'what if' my grandmother had it after all. My mother is a very volatile woman (always has been) and now I wonder if her moods are attributed to HD. Sometimes the what ifs are too much and I feel paralysed by fear, especially now I'm expecting a little one.

Is my risk actually incredibly low and I'm just being anxious? I know some people develop it much later, but is 68 and no symptoms still very rare for someone with HD?

Thank you so much for reading and I wish everyone all the best for whatever journey lies ahead xxx
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Old 11-08-17, 09:50 AM   #2
Trish
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Join Date: May 2010
Location: England
Posts: 2,315
Default Re: Trying to work out my risk, really scared

Quote:
Originally Posted by stacey88 View Post
Hi all,

This is my first post so bear with me :)

My great-grandmother died from HD when she was in her 50s. I only know this because of an old letter my mother found. Nobody in my family has ever spoken about it. I found out about 10 years ago, and didn't give it much thought, but I am now pregnant and it is really playing on my mind.

I am 30 years old, my mother is 50 years old and my grandmother died last year at 68 years old from a blood infection. None of us have/had symptoms, nor have any of my aunts (aged 45 and 47). My doctor said I am low risk, and I should go and live my life! I wouldn't even qualify for the test on the NHS because my risk is less than 25%, and I'm not sure I'm brave enough anyway.

However, I now keep reading about how some people don't get symptoms until late 60s or more, and I keep thinking 'what if' my grandmother had it after all. My mother is a very volatile woman (always has been) and now I wonder if her moods are attributed to HD. Sometimes the what ifs are too much and I feel paralysed by fear, especially now I'm expecting a little one.

Is my risk actually incredibly low and I'm just being anxious? I know some people develop it much later, but is 68 and no symptoms still very rare for someone with HD?

Thank you so much for reading and I wish everyone all the best for whatever journey lies ahead xxx
Hi Stacy

Welcome to messy board.

Sorry to hear the dreaded HD has been mentioned in the family and now things seem a bit more real as it were.

First of all, HD can manifest itself later in life. If your great-grandmother did have it there is a chance it could have been inherited by your grandmother; and then your mum etc. However, only tests would rule it in or out.

You don't say if you have done anything to verify the content of the letter which suggests your great-gran actually had the disease and it was verified as HD? Have you ordered a copy of the death certificate or verified this in any way at all? Not easy I know if the family are not open to discussing family history etc but it could be worthwhile getting more facts if possible.

Let's just say you confirm the HD in the bloodline. I'm kind of with the GP on his/her thinking that, at least for the next few years, you should not preoccupy yourself with worrying about it too much for the sake of your own health (mental and physical) and that of your baby. Would it change things if you knew right now? I'm assuming you are too far into the pregnancy to terminate (if at all in your mind), or would be by the time you had a test result one way or the other so what good would knowing do right now?

I know it's not easy to not think about the "what if?" scenario. Is there any way that you can take control in another way? Put on hold finding out more about HD/your family history etc until your child is a bit older, say 7? Then if none of the others are showing symptoms it could be worth taking the bull by the horn and saying, as a family (you; your mum and aunts), you guys need to seriously talk about how to take things forward as you don't want your/their children to go through such turmoil in the future.

Good luck
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Old 13-10-17, 09:04 AM   #3
jacqueline
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Join Date: Feb 2008
Posts: 43
Default Re: Trying to work out my risk, really scared

Hi Stacy,
Sorry for our late replies.
Some GPs don't have any idea about?
HD anyway. I dont know what your doctor knows obviously. Was you family with the same GP.
Lots of questions pop up at first knowledge of HD in the family.
If you have a chat with some close family and want to know more please pop on the MB board again.
Ages of onset can be discovered very late in life.
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