Here you can share your thoughts, experiences, comments, and questions about the process of genetic testing and genetic counselling for Huntington’s Disease – e.g.,what triggered your decision to test/not to test, how did you handle the different stages of the process, how did you deal with the timeline/the waiting time, who and what was important to you during these procedures, how did you face the test result, 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.
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To test or not to test. That is the question? A very hot topic in the HD community. No right or wrong answer. Everyone’s story is unique. I will share my story which may help others. My HD journey started in 2008 after my father was diagnosed with HD completely out of the blue. My character was that I immediately phoned my GP to refer me for testing. I was shocked to find out the process. 3 sessions with a genetic counsellor, one month apart, one blood test and then back for the results. In total took about 9 months. I was ANNOYED. I wanted to know. Why make me go thru all this? Now after all these years I have realised this was the right process. Once you open Pandora’s box you can’t go back and close it. I would still choose to test and find out even though for me the the news was a positive test. But the whole process allows you to reflect, consider options you may not have thought of. This process should be offered in every country and sadly that is not the case.
My journey started 2 years ago. My mom was tested positive, we never expected that, from that moment i collected some information and i was diving in all websites. October 2021, I had my counseling conversation with 2 doctors in the hospital. I made a full overview of my family members, and their HD repeats so they had a clear view of my thoughts and my family members. After 30 minutes the counsellor asked me if I would let me test immediately if that was possible. I answered yes and they gave me the permission to do that. They were convinced that i was able to do the genetic testing and eventually i tested negative. The waiting time in between is hard, but the positive side for me was, I couldn't go back.
This is what Juanma had to say about this topic in the Spanish version of this Forum:
I’m from a family that has had Huntington's disease for several generations. Being a direct descendant on my mother's side and having the possibility of inheriting the disease, I decided to go through genetic testing at a private lab to find out if I would develop the disease. I was 42 years old at the time. It was a complex decision. I had the support of my family and doctor who accompanied me throughout the whole process. The result was negative. In my family there are people who have been tested and others who have not. I understand and support any decision made by my family members or any other person facing a similar issue.
Either way, I show them my support and appreciate their courage in facing the situation, whether they take the genetic test or not. In any way, I think it is important to be informed and to have the support of family, friends, and professionals. For that, you need to address this topic and first talk about it with the people you trust.
This is what Vida C. had to say about this topic in the Spanish version of this Forum:
Now the tests can be done through the social security, without any cost. Each person is free to do so, knowing the outcome can greatly affect individual lives and each person is a world with different perspectives.