Huntington's affects several members of my family. This includes; my grandmother and my uncle who are both sadly not with us anymore and my mum. Unfortunately I'm gene-positive with a CAG repeat of 42. At risk are my two sons, my sister and my two nieces.

Huntington’s disease has been in my life since around 12 years old when my dad was diagnosed. Growing up and hearing that the possibility of inheriting the disease is 50/50, every little memory lapse, every little stumble, my brain went - "I’ve got Huntington’s disease". I was certain that I needed to find out, and it did come back that I was gene-positive. I have an untested sibling and a sibling with a negative test but we never got to know Dad’s side of the family.

I’m Hannah, wife to Stu who is gene-positive to Huntington’s disease, which he inherited from his now sadly passed Father. We have two children Harry, 11 and Bella-Rose, nine, who were both conceived before we started noticing Stu’s symptoms. They both sadly now live at risk of inheriting the same condition as their dad.

When me and my sister met our dad when I was 16, we were first introduced to Huntington’s disease and the reality of the 50/50 chance we both had of inheriting it. My sister at this point had three children, which meant they were now at risk. A test each later, she is negative and I tested positive. I will always be so grateful that my nieces and nephews are free of this awful disease.

Huntington’s disease was passed onto my children by their father. He died in 2006 at the age of 53, having been symptomatic for over 15 years. Both my children were gene-positive and my son died at the age of 38 (during lockdown). My daughter is 44 and is now in the middle stages of the disease and has had to give up work. As the disease progresses she needs more care and support. My daughter decided not to have children, even though there are now various avenues by which you can have children whom are gene-negative. This came too late for her, which means I will never have grandchildren. This is impacting on her husband who may need to give up work, as she is becoming unable to care for herself. I travel to her, to support with appointments such as physiotherapy, speech and language therapy (for swallowing as well as speech), and different GP appointments. My husband and his family are also involved with caring for her; for which I am eternally grateful.

My wife, Sally was diagnosed with Huntington's in 2013 and, although it was something that I was aware of, it was a discussion she never wanted to have. Since then her condition has deteriorated to the point where she now needs full-time care and is no longer able to do anything for herself. In spite of this, I have been determined to live as normal a life as possible and raise money for the Huntington's Disease Association through various activities.

Mark was six and I was 12 when mum died. We then lived with our Nana who cared for us until she died six years later. I started university but I became his guardian so had to find a job as I had a house to run and a child to educate. I finally went to University and had a short spell teaching but it was clear Mark was symptomatic and needed full-time care so I gave up working to become his carer and cared for him at home until his death.

We can't change the outcome, but we can change understanding. The Huntington's Disease Association have supported us throughout our Dad's Huntington's disease journey all the way to the end and after. We wouldn't have coped without the Huntington's Disease Association.

Our first experience of Huntington’s disease was with my mum having it, she was diagnosed later than most and already had many symptoms. It was incredibly hard to live with as it was my brother and myself at the time caring for her and not getting help or knowing where to ask for help. She passed away two years ago in May.

When my mum (Sharon) was diagnosed with Huntington's disease at just 32. The psychosis episodes led to her being sectioned, and her once-graceful movements deteriorated into a struggle for basic mobility. By the age of 54, she needed full-time care, and I had to make the heartbreaking decision to place her in a care home. Balancing a full-time job, caring for my own family, and trying to support my mum was an overwhelming strain. Before Mum went into the care homes, she used to have agency care staff that went around to check on Mum, the care home staff didn’t initially understand the complexities of Huntington's, leading to inadequate care and distressing situations for her—like the times she fell, struggled to dress, or even set her hair alight. Thankfully the care home carers grasp the intricacies of her illness, providing her with the compassion and support she needs.