Here you can share your thoughts, experiences, comments, and questions about coping with being at risk for HD – e.g., what are the biggest challenges, how do you deal with the several uncertainties, who and what helped you handle this situation, etc.
This is an online forum with some interesting topics about Huntington’s Disease. In this section, visitors will have the chance to ask questions, share experiences, interact with each other, etc. Here you will find a list of topics where you can add a comment or reply to others.
This is your moment to speak and be heard. Feel free to use your voice!
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Being At Risk for HD
To be at risk for HD ...
no information about HD - only a couple of sentences describing HD as a severe progressive disease in medical encyclopedias , genetic testing labs only in Moscow which was 2000 km away from my native city.
Describing my feelings then - it was an overwhelming fear and feeling of hopelessness and powerlessness...
what I felt about it later though I have tested negative:
Sometimes I ask myself what would I feel and think if I tested positive these days... what I can say for sure - I wouldn't feel that fear and hopelessness now, because of the information we have and it is our power, as well as the Community we have - united, supportive and kind ❤️