A woman, from Staffordshire, whose husband is living with Huntington's disease (HD), has shared her experience of being a carer and the challenges she and her partner face as part of HD awareness month.

Lynn's husband Rob was diagnosed with HD in 2016 at the age of 50.

HD is caused by a faulty gene in a person's DNA and any child conceived naturally to a parent who carries the gene has a 50% chance of inheriting the illness.

It impacts movement, speech and swallowing as well as how someone thinks and behaves.

Symptoms usually begin to appear between the ages of 30 and 50 and there is currently no cure.

Speaking about Rob's diagnosis, Lynn said: "It was just a complete shock really, because we didn't know it was in the family or anything.

"I personally had never heard of Huntington's and I don't think Rob had either."

The couple met on a night out in the late 1980s.

Lynn was attracted to Rob's ability to show his emotional side, something which has now been impacted by his illness.

She said: "I wish people knew more about the fact that Huntington's is so complex.

"His mood can be different every day.

"It's not just his physical movements, it's his cognitive [deterioration] that affects me personally a lot because his whole personality has changed.

"I'm not his wife.

"He's still my husband, but I'm not his wife anymore; I'm his carer.

"To have that sort of grief hanging over you every day, knowing that there's no cure and it's just going to get worse and worse, it's just sad."

In 2019, Rob had to give up his job on the railway and in 2022 Lynn left work in order to care for him.

Lynn reached out to the Huntington's Disease Association for help after researching the illness online.

She and Rob were able to attend support groups run by the charity and receive advice and assistance from Lindsey, a specialist Huntington's disease adviser, dedicated to helping families across Staffordshire.

Lindsey said: "As a HD adviser I work with families and individuals living with HD to provide emotional and practical support, sometimes that might be navigating the benefits system or the health and social care systems.

"A lot of what I do is advocating for the rights of individuals and families living with HD to ensure they are getting the right kind of care and support, whether that is financial, practical or emotional."

The charity's 'Behind the Gene' awareness month campaign aims to highlight the invisible challenges and hidden stories of HD families.

Lindsey added: "The hidden side to Huntington's Disease, the cognitive changes, such as the difficulties with mental flexibility and future visioning, social cognition, is what people don't always understand very well, especially professionals, who think the person is just making unwise decisions, or being stubborn or difficult.

"A lot of what the Huntington's Disease Association does is about educating and informing about the hidden aspects of Huntington's disease.

"I feel humbled everyday by the strength and resilience of people like Lynn and her husband - they are my motivation and inspiration."

Lynn said the support groups help her to feel less "isolated" and that the charity makes her feel part of a "community".

She added "If I've got a problem, I ring my specialist advisor up, who's a lovely lady."

To find out more about Huntington's disease and the 'Behind the Gene' campaign, click here.