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  • youmeandhd

Jessica's Story

Updated: Sep 10, 2020

2017, I am living in London, in love and thinking about wanting children one day. Knowing that Huntington’s in my family, the having kids thoughts always raised lots of questions of if and how? So I spoke to my GP and got referred to Guy’s for my very first real conversation about what it means to be tested for the Huntington’s disease. Honestly it went well. I left feeling like none of the information was new to me thanks to everything my parents had already told me and I was in a strong place mentally to carry on the process. The genetics counsellor told me the next step was all in my hands, the next appointment would happen when I wanted it too all I had to do was call. Knowing that I had the control of it all made me feel so much better. Two years past, I did nothing, life happened and I did not make it a priority to continue.

2019, I am living in Bristol, single and thinking about wanting children one day. I have been in Bristol around 18 months and I am thinking a lot about what do I want for myself in the next 10 years? Where will I have my family when the time comes? What do I want when it comes to my career? My Mum and cousins have HD and all have visibly noticed symptoms, it is part of our everyday family life and all I can think that maybe that’s my future. 

It terrifies me. 

I remind myself daily its just a maybe, don’t fixate on it too much, you never know what may happen. But the unknown became the over powering thought. My Mum was not overly keen on me finding out, she worried bout me worrying to much if I found out that I had HD. She wanted me to be happy and not stressed and mostly she wanted me to have everything I wanted however, I needed to know. 

So June 2017, I go to my GP and I get my referral date. Off I go to the Genetics  Counsellor in Bristol and we start talking about everything. The state of my mental health both now and after I know was a huge  part of our conversations. My Counsellor was a wonderful women who explained everything to me perfectly, listened to all of fears and made sure that every decision I made was mine and that I had all the information. I went to every appointment alone. So many of my friends and family offered to come with me over and over, they are my rocks, but I am a people pleaser and I knew I would make sure the people I was with were okay the whole time and not be honest with my truest feelings and I had to make sure I was doing this for me and what I needed. 

November 18th 2019. CAG 37. 

Now I know. I have Huntington’s Disease. 

The moment is in my brain forever. I felt completely ready for that news. I was numb though, my entire future had changed in an instant. You know in books and movies when people say ‘it was like I was floating above my own body’ that was sort of it. I just remember not feeling connected with my body. My counsellor told me there was no right or wrong in what I did next.  I could sit there and talk it out for hours or I could get up and leave. My day, my results and my reaction, I knew I was safe. I did not find out alone. I couldn’t take my parents, I needed my get reaction to be about me and not about making sure they were okay. So I asked one of my best friends, she came, she listened and she held my hand. She is my soul friend. And I would not be alive without her. 

We left and she asked me wanted to do next, I wanted new PJs and so off we went and got new PJs. 

Now 2020, only 7 months later and in all honesty I still have so much to figure out and understand. I am continually processing my HD diagnosis and even though I had the biggest question answered, more and more pop up everyday. Now it feels like I have all my options open to me and by knowing I have the control back on what I choose to do with my life. 

No one knows what the future holds, we just have to make today count.


Jessica's journey can be found at her Instagram page -

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