Huntington's disease is an all consuming genetic condition that affects whole families. Families that are fighting battles we can't even imagine.

Learn in 5

Get involved

Find support

Family stories

Huntington's Disease Awareness Month

The impact on families - Rosie's story

Read more

Huntington's blog

Mental resilience is paramount - Chris' story

Read more

Huntington's disease awareness month

Huntington's was unknown to our family - Hannah's story

Read more

Community wall

Join our community wall and share how Huntington's impacts your family and what you wish people would know about the disease.


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.
What I wish people understood is that this is a cruel disease that doesn't discriminate and affects every person differently. The mental strain of knowing that Huntington's will affect me is one of the biggest challenges we struggle with as a family. But I wouldn't change knowing even though it's changed my whole life. This gives me the opportunity to try and find a cure for my sons.


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.
The one thing I wish people knew about Huntington’s disease is simply just what it is. When I tell people I have this disease they say, “oh you’ll be ok” or “there will be a cure” and I know they’re just trying to be nice but I know it’s not that simple.
Awareness month


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.
Huntington's doesn't just affect my husband, whilst he feels and lives as best he can with the mental and physical effects, we his loved ones feel the emotional strain of Huntington’s being a part of our lives. The constant fear of what’s next and how to predict when the next change will be, makes our lives feel really uncertain.
Awareness month (2)


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.
I wish people knew how Huntington’s disease is not just physical symptoms. Psychological symptoms are lonely to manage as no one else can see it. Day by day I struggle more with things like depression, apathy, irritability and sometimes it's like I can physically feel my old self slowly slipping away.
Awareness month


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.
I would like people to know that Huntington’s disease affects the whole family. it destroys relationships, robs you of the person you know and love, long before they pass away. We need more specialised care pathways, with care homes being better equipped to care for Huntington’s patients.
Huntington's awareness month


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.
In the early stages I wish people wouldn’t be so quick to judge. My wife was refused service at a bar as both her gait and speech were affected. Too many people are too quick to judge. I also wish more people were aware of Huntington’s in general. Whilst other illnesses seem to have a much higher profile, sometimes due to well-known personalities getting involved, Huntington’s seems to be very much a hidden illness which has devastating consequences for a lot of families.
Holiday | Huntington's disease


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.
It’s isolating for the person with Huntington’s and their carers as the disease progresses it becomes more difficult to do the things they did before. It’s financially difficult the person with Huntington’s usually has to give up work so that income is lost and the family carer often gives up working too or drops hours yet costs increase such as wet rooms and adaptations which often aren’t funded.


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.
I wish there was so much more awareness for them and Huntington's disease. I wish people knew the actual effects of Huntington's, when you read them online it doesn't give a true representation. I also really wish people knew how much it affects people daily long before they are symptomatic. My other wish would be that there was a lot more awareness and general understanding for this cruel disease.


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.
For me the more you talk about it with different people the easier it is to process. It doesn’t have to be a ‘secret’.
Huntington's Disease Awareness Month


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.
Huntington's disease is more than just a genetic condition; it's a profound journey that affects every aspect of life. I wish people knew that those living with it aren't just fighting physical symptoms—they're facing emotional and mental battles every day. Compassion and understanding can be the best medicine.
Awareness month

What Huntington's disease professionals wish people knew