If you are helping someone with Huntington’s to manage daily life, you may gradually be taking on the role of ‘carer’. Many people who look after a member of their family or a partner don’t see themselves as a ‘carer’ because first and foremost they are a son, daughter, partner or parent to the person with Huntington’s. As the disease progresses, however, the person with Huntington’s will need increasing amounts of support, and the caring role increases.
Caring can become difficult, tiring and stressful. This can have a big impact on relationships.
In addition, because of the genetic nature of the disease, some Huntington’s carers may have cared for others in their family, or may be at risk of the disease themselves.
How you feel about your caring role will vary greatly depending on your individual circumstances, but all carers are likely to find that there are times when they struggle practically and emotionally.
In our Support for carers section, we explore some of the different kinds of support available, but a good starting point is Carers UK, the UK’s national membership charity for carers. It offers advice, support and a collective voice for carers. You can contact Carers UK via its advice line: 0808 808 7777.
Your local Specialist Huntington’s Disease Adviser (SHDA) can also give advice and support, as well as explaining the situation to other professionals involved, if they lack knowledge or experience of Huntington’s. We also have local branches and support groups and an online message board that enable people affected by Huntington’s to support each other.
Living with Huntington’s disease can be very difficult, for you as a carer, as well as for those who have it. The right support can make a big difference and we’re here to help.
If you are looking after someone with Huntington’s, it is very important to do what you can to look after yourself, as well as the person you are caring for.
When we talk about the symptoms of Huntington’s, we tend to talk about physical and movement changes, cognitive changes and behavioural changes.
Most carers of people who have Huntington’s will notice behaviour changes in the person they’re caring for.
Because Huntington’s is a rare condition, living with it can feel quite isolating at times. It can also be difficult to cope with all the changes it brings about.
I’m from the Nottingham and am in my 30s. We found out we had Huntington’s in our family as one of my parents started developing symptoms, but previously there was no known history.
As there is a 50/50 chance of inheriting Huntington’s, I was tested in August 2014 and discovered that I too have the gene, but I hope to remain symptom free for some years yet.
Huntington’s disease is only part of my genetic make-up. I always say that if I didn’t have my genes exactly as they are, I wouldn’t be me. Huntington’s does not define who I am.Learn more
I'm 19 years of age, originally from Northumberland, but currently study accountancy and finance at the University of Lincoln. I've witnessed the effects of Huntington’s disease since before I can remember, with it affecting my grandma, then learning my dad had inherited the gene and I also had a 50/50 risk. I took the genetic test and discovered in September 2016 that I had also inherited the gene.Learn more
I first became aware of Huntington’s disease as my mam had the gene and bravely battled the illness for 20 years, until very sadly she passed away two years ago at the young age of 61.
I too was tested 11 years ago and I also have the faulty gene. I'm now 41 and from the test results my symptoms are due to start any time now. My daughter Ellis is aged 19 and she also was tested last year and has the faulty gene.Learn more
My dad was diagnosed with Huntington’s just after my 25th birthday. He struggled with the disease for a further 14 years and died just after my 39th birthday. During those 14 years we have watch our dad go from being the life and soul of any party to being bed ridden, needing to be fed blended food, incontinent...Learn more
I’m from Nottingham and my parents had a very rocky marriage which ended in divorce. My three brothers and I lived with my mum. My father had a lot of mental illness and we weren’t aware he had Huntington’s until he passed away and his brain was sent to Cambridge for tests. In those days it was known as Huntington’s chorea.Learn more
Hello! My name is Mark, I live in South East London with my girlfriend and my dog, Lenny. I am 30 years old and about a year ago I was diagnosed with having the defective Huntington’s gene.
My Dad was diagnosed with Huntington’s disease 11 years ago but, like so many people with HD, he was unaware that the disease existed in our family until his symptoms started. I was 18 when our family found out this news, and it made sense not just of what was happening to my Dad, but of what his Dad (my Granddad) had suffered with in silence many years before.Learn more