Becky shares her story of what life is like with Huntington's in her family.
“It’s so important to me for people to know the daily struggles with Huntington’s disease. It can be small things, like just putting a wash on that can cause distress to them. Tasks can just be too stressful and overwhelming for them. Non-coping is a big thing. The person just not coping with everyday life. We really struggle, it feels like a daily battle.”
Becky is a single mum living in a small village in Devon where she runs her own housekeeping business. As a proactive Huntington’s disease ambassador, Becky does what she can to help the public and healthcare professionals understand the invisible cognitive changes that the family notices on a daily basis. She writes articles, attends events, records videos and tries to educate healthcare professionals in any way she can.
“It’s just so important for me to raise awareness, as not many people know about it. Even some clinicians have not heard of it before.”
Huntington’s disease has impacted Becky and her family for many years. Three members of her family, including her dad, have died from Huntington’s. One member of her family still lives with the disease. This is an ongoing struggle for Becky and her family.
Becky and her mum have cared for their family members for many years. They experienced the heartbreak of seeing relatives out of work for over a decade before Huntington’s was even diagnosed.
Cognitive symptoms can precede motor symptoms for many years. This means someone living alone may start to develop signs that affect daily life, long before there is a diagnosis - and often without anyone noticing, including healthcare professionals and family members.
Becky said that their family member drank their mouthwash, dipped electrical plugs and kettles in their kitchen sink water, then into the wall, left the doors wide open when going out, neglected personal care, ate mouldy food. They began avoiding medical appointments early on, before cognitive signs were even picked up on by others.
When these changes are not addressed, it places enormous pressure on families. Seeking support becomes even harder when a loved one is in denial or lacks insight into their own condition.
Becky’s current family member — like her dad — had no idea what was happening. Both were shocked by their diagnosis.
“They lost capacity, around their health and finances. We’ve had difficulty with assessments for capacity. They refuse medical help and a lot of other help that’s offered which is hard when you can see someone is struggling. They will ask for help, but then due to the confusion, refuse it, which is really distressing for us.”
The Huntington’s Disease Association is actively trying to change this. One of the key asks of this year’s campaign is to strengthen care for those working with people with Huntington’s disease. A major focus this Awareness Month is on educating more professionals to recognise and respond to symptoms early.
“The Huntington's Disease Association have been a tremendous support to me and my family. I was directed to the regional Specialist Adviser. I was able to share my concerns and was guided through information about Huntington’s disease, but also directed to my local care trust and GP to access further support. Just talking things through with my Specialist Adviser was so reassuring, I wasn't alone anymore. I felt a weight had been lifted.
What you wish people knew
“I would like people to know just how hard it is for the person but also the family and friends navigating care, medical help, the financial problems. It’s also important for people to know that several family members can be affected. It’s realy hard when we had two members of the family that were symptomatic at the same time. But with some families it can be more.”
Huntington's Disease Awareness Month 2025
This year's theme is Behind the Gene - The invisible challenges and untold stories of Huntington’s disease.
This May, we are showing the many faces and many lives behind Huntington's disease and what they wish people knew. Too often, people affected by Huntington's disease find themselves educating the public and healthcare professionals about their condition.
As part of this campaign, our aim is to educate more professionals about Huntington's disease. To do this we have created a new factsheet that is being distributed to GPs and health care settings across England and Wales.