Huntington’s disease is caused by a faulty gene in your DNA (the biological ‘instructions’ you inherit which tell your cells what to do).
This means that if people in your biological family have Huntington’s (that is, the family you are genetically related to), then you may be at risk of the disease.
Every child conceived naturally to a parent who carries the Huntington’s gene has a 50% chance of inheriting it.
Living with the knowledge that you are at risk can be very worrying. You may feel that you would prefer to know for certain whether or not you have the faulty copy of the gene. Alternatively, you may feel that you would prefer not to know, until or unless you get symptoms. Deciding whether to have the genetic test is something to think very carefully about as it could impact the rest of your life. It may also affect others in your family, but it is your choice.
You can get support and information about testing and living with the risk of Huntington’s. Although it is a rare disease, other people live with this risk and you are not alone.
Getting the right information and support for you is vital and we’re here to help.
Living with the risk or the symptoms of Huntington’s means facing some particular challenges, emotionally and practically, which most people don’t have to face.
Huntington’s is a genetic disease and a DNA test can now be carried out which will usually tell you whether or not you have the faulty gene that causes it.
If you have Huntington’s or know you are at risk of it and would like to have children now or in future, you may wonder what your options are.
Any serious health condition or disability can affect you in terms of certain types of insurance, so it makes sense to find out the facts and make sure you are adequately covered.
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