If you have gone through predictive testing for Huntington’s disease and the test has shown that you do not have the gene (you have tested negative), it can lead to mixed feelings.
Everyone will feel different about this result depending on their life circumstances and many other aspects, but we know people can find this hard to manage.
It is really important to know that all of these feelings are OK! It’s also important to know where you can access support.
For a small minority though, the results are not quite as simple because they receive a result in the ‘grey area' known as either a reduced penetrance allele or an intermediate allele. You can find out more about what this means here.
"I am over the moon, this was exactly what I wanted to hear."
"I thought this was what I wanted to hear, but I feel really deflated."
"I feel guilty about others who haven’t had a good result."
"I feel angry; people say I am the ‘lucky’ one but actually, I will be the one caring for my siblings…and then I feel guilty for even thinking this."
"I have lost a part of who I am."
"I am so grateful to know that my children are no longer at risk."
"I have lived my life as though I have the gene, taking chances and risks because I thought my life would be cut short. I am not sure how I feel about this change."
"I don’t know who to talk to – who will understand how I feel."
"I got a lot of support from social media, people going through the same thing, I don’t think I can tell them my result."
"I don’t want people to know."
People who have tested negative often don’t know where to turn or who to talk to for support.
Our advisers are here for you, they understand the mixed emotions around a negative test result. If you are 26 or over please contact your local Specialist Huntington's Disease Adviser (SHDA).
If you are 25 or under you can access our Specialist Youth Adviser.
IAPT offers talking therapies, such as Cognitive Behavioral Therapy (CBT), counselling, other therapies, and guided self-help. It offers help for common mental health problems, like anxiety and depression.
Private Facebook group: Kim’s Friends, a group for people who have tested negative for Huntington’s disease.
Huntington’s Disease Youth Organisation (HDYO) article on genetic testing, including reactions to a negative test result.
A genetic testing journey - Emma's story.
I know my mum would be proud of the work I am doing - Sian's story.
Huntington’s disease - The Pryce sisters’ story.
Huntington’s Disease Youth Organisation (HDYO) ‘tested negative chat’ three young people share their experiences of testing negative.
Watch the video (35 minutes).
Watch the video (2.5 minutes).
Marianna and Ewa’s story.
Watch the video (19 minutes).
Many people who test negative want to continue their involvement with the Huntington’s disease community. Some ways people can do this:
You can still be involved in research with a negative result. Any member of a family affected by Huntington's disease can take part in Enroll-HD. This includes people with a family history of Huntington's even if you know that you don't carry the expanded gene.
HDVoice is a panel of volunteers who help the Huntington’s Disease Association learn about the needs of families living with Huntington’s. They work on different projects to help us make sure our information, literature, and the research we’re involved in has the biggest impact on the people we work with.
The power of sharing a story is invaluable. It really helps people to hear how other people felt after testing negative. If you would like to share your story like Emma and Sian in the blogs above, please contact [email protected].
Would you like to support others who have tested negative? We would be keen to have peer volunteers supporting others on our Facebook page Kim’s Friends. If this is something you would like to do please contact one of our specialist advisers.