Specialist treatment can delay the onset of stroke by up to five years in people with a rare inherited condition that causes early-onset strokes, a study has found.
The findings come from the national CADASIL clinic at Addenbrooke’s Hospital in Cambridge, which supports people suspected to have the condition and their families.
CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy) is a genetic condition that affects small blood vessels throughout the body, increasing the risk of bleeds – including in the brain – that can lead to stroke.
The study, led by consultant neurologist Professor Hugh Markus, looked at 555 people who had been referred to the clinic between 2001 and 2023, during which time awareness and access to specialist care improved.
It found that patients referred before 2016 experienced their first stroke between the ages of 37 and 56, while those referred afterwards typically did not have strokes until between the ages of 42 and 61 – almost five years later.
Markus said: “It means a lot to see that the work we are doing to improve awareness and diagnosis appears to be having a positive impact.”
CADASIL can cause early-onset strokes and increase the risk of dementia. It often affects multiple members of the same family, with a 50 per cent chance of it being passed on to children.
People with the condition may have multiple strokes between the ages of 30 and 60 and can also develop migraines and dementia.
Many people affected by CADASIL are supported by the specialist clinic in Cambridge.
Glenn Bate, 69, from near Diss in Norfolk, was diagnosed with the condition after having a stroke in 2015. He is also a trustee at CADASIL Support UK.
He said: “Having a stroke changed everything in my life – I had to relearn everything. I couldn’t drive, and I felt like my life was over.
“When I first left hospital I had problems with walking, balance and anxiety, it felt like I was going home to die.”
He said attending the clinic had also helped him manage his mental health.
He said: “When you’re diagnosed, the possibility of having more strokes can be really scary.
“It’s fantastic to know that people like me are now living longer without experiencing strokes.
“It means we’re not just living longer but getting a better quality of life.”
