Although there is currently no cure, there are many ways to get help with the symptoms and challenges of living with Huntington’s disease.
It can be helpful to consider any lifestyle or practical changes you have not already made, that might make life easier - for example see living well, employment, emotional support and financial matters.
There are also different types of care that you might need to access at different times.
If you meet certain criteria, you may qualify for NHS continuing healthcare which means the NHS is considered responsible for providing for and fully funding all your needs in any setting. This could be in your own home, a care home or hospice.
In England, the NHS can arrange care for you or you can choose to receive the funding for your care as a direct payment, known as a personal health budget. Personal health budgets are not currently available in Wales, Scotland or Northern Ireland.
The rules around who qualifies are complex and the best way to find out if you are eligible is to ask your GP or social worker to arrange an assessment for you. In addition, your local Specialist Huntington’s Disease Adviser SHDA can advise and support you throughout your illness, as well as supporting the other healthcare professionals involved in your care, if they lack knowledge or experience of Huntington’s.
We also have information for GPs about Huntington’s care, which you can ask us to send to your doctor on request. Just contact us for more information.
People with Huntington’s and their families may need a lot of support to help them at different stages. As the disease progresses, symptoms and needs change too.
Living with Huntington’s can have an impact on your finances, which can add to the challenge of what is already a difficult situation.
Keeping active and doing things you enjoy can help you cope with the big challenges Huntington’s can throw at you, whether you have the disease yourself or you’re caring for someone who has it.
There are certain practical matters to consider if you have Huntington’s disease or are caring for someone who has it. It’s a good idea to take some time to look at these and plan ahead.
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