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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
Posts: 1
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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