Being tested to see if you have Huntington's disease is a very personal decision and not one to rush into. Some people may find out at 18, others never, and some get all the way through testing and decide they don't want the result. Tiffany shares her experience of genetic testing, why she chose to find out and how she found support through the process.

Tell us a little about you and your background

"I have a small, close-knit family on both my mother's side and my father's side. The Huntington’s gene has been passed down through my mother’s side; my grandfather had it, and my uncle and my mother now have it. My family is very supportive and have never denied me access to the truth in life. I am like any normal young adult, I have hobbies, and interests. I know my future is already supposed to be written out for me but who said we have to follow the script?"

When did you first know that Huntington’s disease affected your family?

"I have known about Huntington’s disease for as long as I can remember. I always remember watching as my grandad slowly changed with his ‘illness’. I didn't know the cause but I knew he couldn't help it and I accepted that. Eventually, when I was old enough to understand, I was told more about Huntington’s disease and this helped me to understand my uncle better. As I started to get older, into my teenage years, my family and I discussed Huntington’s a lot. It might have had an impact on our family, but that impact was always positive and it always brought us closer together."

Why did you decide to get tested?

"When I was around 16/17 years old, I started discussing with my mother how my life might plan out and my interest in getting tested. My mother and my nan both agreed but urged me to take my time and think about it, then I could make my decision when I was 18. I always knew I wanted to be tested, I was determined. There were mixed reviews about what I should do. Some people disagreed with my decision and told me to wait, but there were people who supported me and my decision. In the end, I actually waited almost three years before having the test. If not for the result, then for my own piece of mind. Positive or not, for me, knowing was better than the constant unknown."

What was the testing process like?

"I feel very fortunate, but for me, the entire process felt like a breeze. I had appointments in the genetics center and everyone I spoke to always made the best effort to make sure that I was both comfortable and healthy in all aspects. Any queries I had were answered, and any unsure doubts were effortlessly resolved. The genetics teams I had were there for me every step of the way, preparing me for any outcome which is the most important part. The support and ease of the testing process made me more confident in my decision. Even if I was terrified of the needle, it was nothing compared to the support I received."

How did you feel after getting your result? 

"When I received my result on 29 April 2022 I didn't really feel anything. Not happiness, nor sadness. The one thing I did feel was like a huge weight off of my chest. I know my family was hoping for a negative result but I did not feel fazed by it. However, on the night when I was all alone it did set in. Although I was upset, I was so grateful for the support."

Were you supported through the testing process? 

"I received support from family, friends, my partner, and the genetics team. Everyone was consistent with checking up on me and making sure that throughout the process I was happy. I genuinely could not have felt more supported."

Has the Huntington’s Disease Association helped you in any way? 

"The Huntington's Disease Association has helped both me and my family with information and support for years. When I was first made aware of what Huntington’s disease was, I tried to find as much information on it as possible. The Huntington's Disease Association was available on many platforms and helped provide me with so much understanding. They also provided support for my family members that have Huntington’s, allowing them to do a bit more."

Do you have any advice for anyone thinking about getting tested?

"For anyone thinking of getting tested or anyone who may have had the same situation as me, the best advice I could ever offer to you is to take time to yourself to research. Think of all the possibilities and decide how each result would impact your life. Do not let anyone tell you what you should or shouldn't do, this is your choice and your life therefore the only person who can make the decision is you. There are people out there who can support you with any decision you make."

Thank you so much to Tiffany for sharing her story with us.

If you want to find out more about genetic testing, you can read our guide here.

If you are affected by Huntington’s disease and are in need of support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk to speak to one of our Specialist Advisers.

If you have a story to share, please get in touch with us via email.