Here you can share your thoughts, experiences, comments, and questions about having children in a family affected by Huntington’s Disease – e.g., what triggered your decision to have/not to have children, what kind of support did you have when you considered having children/not having children, your experience with medically assisted reproduction treatments, 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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This is what Juanma had to say about this topic in the Spanish version of this Forum:
I belong to a family that has lived with this disease for generations. At the time of formalizing my relationship as a couple, I was not aware of everything that was to come and that one day I would consider having children. As members of a family that carries the gene that influences the development of this disease, we face the decision of having children from a different perspective. Back then, we decided not to go through the genetic testing process but we were clear about wanting to start a family.
In our personal case, we consulted with different professionals and received help and information about it. Finally, we decided to turn to professionals to move on with the process through assisted reproduction.
Our daughter was born in 2011 without carrying the gene. Years later I decided to take the test when my daughter was six years old.
I send my support to everyone who, belonging to the community of Huntington families, decides to go ahead and create a family. Personally, it helped us to have the support of family members and professionals at all times.
When I was 23-25 and I was about to test for HD I gave myself a word that if the test was positive I would never marry and have kids. Now when I am almost 41 y.o. I realise that life is not black and white and I shouldn't have been so cathegoric. Every life story is unique and there is no one and only right decision. Nowadays we are lucky to have preimplantation diagnostics that helps to make a conscious choice.