Clare’s story

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 watched our dad go from being the life and soul of any party to being bed ridden, needing to be fed blended food, incontinent...

The worst thing for our family was how dad suffered from mental ill health and had schizophrenia, depression, anxiety, obsessive compulsive disorder and psychosis. He was extremely angry and frustrated by his situation.

Being at risk

I live at risk of HD and have a 50/50 chance of inheriting the disease. It has taken me over 10 years to decide that I do not want the test. I now live in hope that there may be a cure that I may not have HD.

But every day I wake up and think, my dad would not want me to be sad about the situation so I choose to be happy and to be positive. I stay strong every day just like my dad would have wanted me to.

Getting support

I have had support from my Specialist HD Adviser over the last 14 years, she has been fantastic. She has always been there for me and has given me advice and support. She has also given me difficult and hard advice over the years. I cannot thank her enough.

I am happily married and my husband has been at my side throughout everything. I also have an older brother and my mum too.