March 26, 2019

Genetic Testing Part 1: Your life in an envelope.

One thing about genetic testing that is important or everyone to know is that it is a totally personal, unique journey for everyone. Please know this is just my view on things and everyone’s will be different I am sure. I had so many opinions put onto me during the years I hadn’t tested for Huntington’s Disease, and the years after too. Ironically, the reason I knew when someone did not understand the scale of it is because they would be adamant “I would just have to know, I would want to know”.

There is a reason that genetic testing is a complex process for Huntington’s Disease; counselling is required before hand and it isn’t a blood test you can pop into your GP surgery for. If the decision was as easy as some assume, then this topic wouldn’t be discussed at all. However, it is in fact the one of the biggest difficulties within families affected, and a frequently discussed topic on forums. If you have a friend, relative, or partner needing genetic testing I urge you to be patient. Listen. Understand the ups and downs, and worries. Perhaps keep strong or rigid opinions to yourself unless you’re sure they will be helpful, as it is so subjective and an emotional rollercoaster of a journey. People must reach the decision to test in their own time, or the after effects can be truly devastating of someone isn’t truly ready.

With the stakes being so high at 50% chance of inheritance, the test for Huntington’s is often referred to as ‘the toss of a coin’. That simple flip of heads or tails; ‘heads’ and your life will be like everyone else’s, with dreams of growing old and living life how you want to. The other side, ‘tails’, meaning that at any point from the age of around 30 onwards you’re at risk of changing personality, becoming gradually more disabled, and suffering severe psychiatric and cognitive issues. The reality of that gamble is enormous, and once you have that information you can’t undo it. I think it is often overlooked by those that don’t have Huntington’s Disease in their family.

Here are just a few of the scenarios faced: Several members of one family can end up testing and several will have an undesired result, potentially all; many families disagree on a person’s choice to test or not test, and some may even keep the results secret; some may choose not to test but may exhibit symptoms they’re unaware, but their loved ones start to notice.  How do you deal with that situation?

There really are so many complex issues around the genetic test, these are only a few examples where the decision can become so difficult. I haven’t even touched on the the scenarios where children are involved too; it can have a direct impact on family planning and people often already have children when they discover Huntington’s Disease is in their family. How do you tell your children? When do you tell them?

To try and help those going through testing for HD, I wanted to share a series of stories from some amazing followers who have given me their story.  I hope that if you are considering testing, you may be able to relate to one of these stories. If you have tested, it ay comfort you to know you’re not alone. Series 1 of this blog will be my story behind my testing. The other stories can be found in the blog section of the website. Some stories are anonymous on request, and some named. Each story will have HD+ or HD- in the title to show which result they had.

Please know there is information on genetic testing on the NHS website and the Huntington’s Disease Association website. Please visit the “Useful resources” section to find these links.

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