Here you can share your thoughts, experiences, comments, and questions about having a negative result in the HD genetic test – e.g., how you handled this information, which emotions were triggered by getting this result, what are the biggest challenges after you have learned about your negative status, how do you communicated this result to your HD positive relatives, etc.
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Testing Negative for HD
I tested negative, but the 2 years before that, I always doubting if I had the disease. I made a bucketlist and did some of the things I always wanted to do. I never thought longer than 2 minutes about a situation where I was testing negative. It's weird because I didn't expect that. They also said i need to relax after the result and let my emotions come out.
First 2 weeks I was feeling depressed, I felt horrible, and I spoke to the counselors, it was normal. Eventually it changed to a good vibe. Now I'm trying to do as much as I can for other family members, or HD members in general in the world.
Since I was a child there were rumours in my family that probably I didn't have the gene as I didn't take after my dad, who was HD positive. I still don't know if it was wrong or correct behaviour of my relatives but it gave me a strong belief and hope that I won't inherit the mutant gene.
Later in 2006 (I was 25) when I got tested I was still sure that the test will be negative but I was nervous during those 2 weeks of awaiting for the result. I did the test in Moscow, in one of the largest genetic centres in Russia, but the doctor, that gave me the result didn't talk to me neither before the blood test, nor after having my test ready. Of course it was stressful for me and I needed professional support. My family knew nothing about me doing the test, I didn't want them to worry about me, as HD topic was forbidden in our family.
Getting the negative result was a big relief for me, but then came the feeling of guilt that I am healthy and my sister is HD positive which lasted for 10 years... it never left me until I started some volunteer activity in Russian HD community.
I am glad that negative feelings could transform in good ones - desire to do something good for HD community.
This is what Juanma had to say about this topic in the Spanish version of this Forum:
In 2017 I received the results of the genetic test that determines if you are going to develop the disease or not. The result was negative. After going through a lot of things in my head, I was faced with a series of emotions, at times conflicting. Although I felt a huge relief, I thought about my situation if it had been the opposite and I also put myself in the place of family members or other people who have gone and will go through this situation in different conditions and with different results.
It is a complex situation that many people have to face and finally I would add that it can be easier if you have the support of your loved ones as well as professionals to guide you and offer you their knowledge about it.