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!
Privacy and Terms:
- A name and an email address are needed to participate in the forum: If you want to remain anonymous you can use a nickname. Your email is just a procedure, it will remain private and nobody else in the forum will be able to see it.
- Every comment, reply or new topic needs to be approved by a moderator. Your contribution will only be seen after it is approved. We kindly remind you that this is a safe and respectful space, so everyone needs to be careful with the words and messages dropped in the chat
- Any ads will be treated as spam and will be deleted during the moderation process.
Notifications
Clear all
Apr 28, 2022 11:44 am
1 Reply
May 03, 2022 2:02 pm
To be at risk for HD ...
in 1995-1998
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:
in 2006-2022
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 ❤️
