Chris CraddockJersey communities reporter
BBC
Laura Elizabeth was overcome by emotion when she heard the news about the new treatment
A woman whose mother, aunt and grandmother died from Huntington’s disease has described a breakthrough in treating the genetic condition as “totally overwhelming”.
The disease kills brain kills and starts to affect people in their 30s and 40s before they die a couple of decades later but month researchers found a way to slow the disease by 75%, meaning patients could enjoy decades of quality life.
Laura Elizabeth, 32, from Jersey, said a “big cloud over my future” had lifted after previously deciding not to be tested for the disease as there was no treatment.
Ashley Delgado, 36, who is in the first stages of the disease, said the breakthrough “was super exciting and much overdue news”.
Laura Elizabeth
Ms Elizabeth’s mum, Minnie, had Huntington’s symptoms including slurred speech, mood changes and balance problems
The disease runs through families and resembles a combination of dementia, Parkinson’s and motor neurone disease.
Ms Elizabeth said the news of the breakthrough had given her hope.
“It was like totally overwhelming,” she said.
“I just spent the rest of the afternoon kind of like crying.
“I’ve always had a big cloud over my future and this news feels like it’s lifted and there’s a bit of light which was never there before.”
Ashley Delgado has lost her independence because of Huntington’s disease
Ms Delgado inherited Huntington’s from her father, Antonio Delgado, who later died from the disease.
“It’s been difficult in the last year or so,” she said.
“It’s meant that I’ve lost my independence a lot more now.”
“I’m so pleased about the breakthrough because the people involved are at my specialist hospital in London so it’s really exciting.”
Ashley Delgado
Ms Delgado saw how Huntington’s disease affected her dad when she was a child
People have a 50/50 chance of inheriting Huntington’s from a carrying parent, according to the NHS.
The new treatment is a type of gene therapy given during 12 to 18 hours of delicate brain surgery.
Ms Delago raised money for Huntington’s Disease Association (HDA) in 2024 by running the London Marathon because of the help and support the charity had given her.
Huntington’s Disease Association
Cath Stanley wants people affected by the news to know help is available for the
The association’s chief executive Cath Stanley said “a 75% reduction in progression is incredible” but added “there’s a long way to go from getting this from a clinical trial to actually prescribed for patients”.
“For some people this is treatment that will never be possible so to actually reach out and access our support now and in the future is equally important,” she said.
Simon West, medical director for Health and Care Jersey, said: “We are watching with interest the trials that are ongoing in the UK into treating Huntington’s.
“Health and Care Jersey is in the process of setting up its own Treatment and Interventions Prioritisation Policy , which will allow us to assess which drugs and treatments make sense for islanders.”