top of page

Story Time - Jessica aka Dancers Disease

Updated: Mar 24, 2022

I am honoured to share with you all Jessica's story, her Huntington's journey is unique to her, and i want us all to remember this. It is amazing that people like Jessica wanting to share her HD story to help raise awareness and honestly help the rest of us feel less alone in the world.

Please remember that her experiences and feelings are unique to her, each HD patient is different and each persons HD journey is different, lets keep that in mind and show Jessica kindness and love!

If you would like to follow Jessica on Instagram please follow her at @dancersdisease

With the disclaimer out of the way, and a bit of a ramble at that! Let me introduce Jessica and her inspirational story. Jessica shares with us a small outline of her HD journey but boy, will it have a big impact on your life. Grab the tissues because you will need them! Jessica shares her HD results with us, and in the most inspiring and motivational way possible she gives us all a reality check that we are lucky to be here.

Jessica thank you for sharing, this is a beautiful story and i love your positive outlook on life! I hope that when i get tested i can have the same outlook because reading this brought a tear to my eye on how strong and amazing a person you are! The HD community are lucky to have you.

Take it away Jessica.....

Huntington's (HD) has been in my life for as long as I can remember. My parents have been open with me about it taking my Grandmother from me the year I was born, but as a young child, I wasn’t fully aware of what that meant for me. My mother was tested at age 45, we found out her result was positive with a CAG of 38. Indicating she will get symptoms in later life. I was 15 and found out that my mum would slowly start disappearing right in front of my eyes. It was explained to my brother and I the risk it posed on us too. My parents were amazing at protecting us and keeping our family upbeat, ensuring us that this news wouldn't change our family, meaning that my childhood stayed as stress-free as possible.

*For anyone new here, each child of a Huntington's patient had a 50% chance of inheriting the Huntington's Gene - if you would like to learn more please visit HDYO, being at risk section*

It wasn't until I was 18, the legal age for being tested, that it became our daily life, my Aunt was now in full-time care and my mum's symptoms started. It was very subtle, to begin with, her mood and memory, almost unnoticeable at the time but looking back I know now what happened. At 25 I decided to start the testing process, I went to my GP in London and got referred to the same hospital as my mum and had my first consultation to talk about what testing means, what a positive result means, and how a negative result can feel. I decided that I was not ready to find out.

Over the next 18 months, my life went through a lot of changes, I moved to Bristol and went through a big break up, my mum's symptoms had become a little move physical she was tripping over more and lots of physical twitching in her sleep. As her HD journey progressed my mind kept jumping to my future, will i have children? Will I want to marry someone and have them have to handle what my Dad does daily? Can i choose a career that might take me 15 years to get to and yet I’ll start getting sick at the same time and then lose my job? My ability to drive and my independence, when will i lose that? The thing I kept coming up against was that these were all ‘if’ questions. They were all only things I would need to find solutions for if I had HD.

This is why at 27 years old I started the process again, I was referred to a consultant and we spent 6 months talking through every part of HD, from the test to the results, to what will happen to my body. I got my positive result on 18th November 2019 with a CAG 37. High enough to mean I will get HD but in the weird middle ground so predicting when it will happen is near impossible. It indicates a later in life start to my symptoms but I still in the window of being aged 35-50 years old.

I won't lie, finding out doesn’t stop these questions from being part of my life, however, now I have my answer and I can make decisions to plans for myself. I have more focus and more wants in my life. I feel like I can get excited by things again and put energy into my future again. It hasn’t been long since I found out and every time I write down the date and my result I cry, even as I wrote this, but I am so glad I know. I needed to gain back control and ownership over something that continues to throw new challenges at my family. Now I find the joy in every day, big or small this world is brilliant and I am lucky to be in it. I'm living in another new city, taking steps towards my dream job. My diagnosis was life-changing, it shocked me to my core and I am a different person because of it, but now I am proud of who I have become. To be part of a community that understands, support and loves me unconditionally is a blessing. All I can say is, thank you.

If you would like to share your HD story on the #Imnotdrunk Lifestyle Blog please email you can share a general overview, what it's like to be at risk, a carer, affected, testing, PGD, tested negative... - we welcome absolutely any story.

Thank you once again, Jessica your story was truly beautiful!

84 views0 comments

Recent Posts

See All


bottom of page