Hannah was unaware of Huntington's in her family until just months before her dad passed. By this point she had also started a family of her own.

My Dad was very poorly for as long as I can remember but for quite a few years but we had never had a diagnosis and I remember constantly feeling so confused by the fast decline in his health with no idea what was causing this.

Unfortunately my dad had a brain injury whilst being in the navy and again when he left the navy so his symptoms were seen as a result of those injuries. My grandad (Dad’s dad) passed away when my dad was young of a heart attack so Huntingtons had never been known in our family as the suspected carrier was him.

Because there was no knowledge of Huntington's disease, my dad wasn’t tested and diagnosed until May 2023 and unfortunately we were too late to treat the symptoms and he passed in August 2023. Knowing a lot more about Huntington's now, it is now so clear to me that he had it looking back at his symptoms.

I only wish I knew what I know now so he could have had help much sooner which is why it’s so important that we spread awareness so everyone knows about the disease and symptoms so no one is left to live without the treatment to help with the management of symptoms.

After losing Dad, I decided to find out if I had the gene I went through the process of predictive testing and had lots of counselling.

In December 2023 I found out that I carry the gene and will develop symptoms at some point in my life. I had a daughter before knowing about the disease and so she now has a 50/50 chance of also carrying the gene.

Knowing that I have the gene has had a very big impact on my life both good and bad. I feel lucky to be part of a very small percentage of people who know they have the gene so I can plan my future around the inevitable I know now the support I have not just when the symptoms start but also leading up to that. I’m aware of all the symptoms to look out for along with my family and friends.

I’m part of the Huntington's disease research so I can trial drugs or potential treatments that come out which could help not only myself and my daughter but the many other people also affected by Huntington's disease.
This doesn’t take away from the pain I felt when I found out and how hard it’s been on me and my family, especially knowing that my daughter is now at risk.
I felt a mix of emotions when hearing the news, although I wanted to find out, I felt shocked, sad, and angry. I questioned why us a lot of times I’m still not even sure it’s sunk in yet to be honest. But all of these emotions are a very normal way of processing bad news and it’s okay.
I wish people knew how challenging it is not only on the person affected by the disease, but the family and friends around them and that they also need help and support. 
Thank you to Hannah for sharing this story with us.

Huntington's Disease Awareness Month - In The Family

This year's awareness month campaign we are sharing the stories of families affected by Huntington's disease and asking them what they wish others knew about the disease. We are then asking the general public to take five minutes to learn some of the facts about Huntington's disease.

Find out more