Here you can share your thoughts, experiences, comments, and questions about coping with an HD diagnosis – e.g., what are the biggest challenges, how do you deal with the several uncertainties, who and what helped you handle this information, 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.
Testing Positive for HD
I have put comments on my journey thru genetic testing. No matter how many sessions of counselling I had it didn’t prepare me for the news of being positive. It was still like hitting a brick wall. I wouldn’t change the fact that I tested. For me not knowing would have weighed more on me then knowing I’ll be affected. After the test, 14 years ago I put it out of my mind for about 2 years. I then decided I needed to learn as much as possible about HD. I wanted to be in some sort of control. I have always believed knowledge is power. I was able to retire early, at 55 and concentrate on myself. Exercise, rest when needed, advocacy. This has been my path but we are all different