Jane’s Leigh Syndrome story: “I felt abandoned – but The Brain Charity helped me make friends”

Aged just 13, Jane was hospitalised after a series of severe seizures – but as doctors didn’t know the cause of these, they couldn’t match her to the right medication to stop them.

Over the next eight weeks Jane was moved from her local hospital to Alder Hey, Liverpool’s specialist children’s hospital, where she had a muscle biopsy.

This led to her finally being diagnosed with Adult Onset Leigh Syndrome – a rare condition believed to affect around one in 100,000 people.

Jane first heard of The Brain Charity in 2012 through a friend, and came along to the charity’s coffee mornings and confidence course.

The 31-year-old said: “That first coffee morning was such an eye opener in all the ways you could give help to people like me who had been abandoned by the other places.

“The Brain Charity was so welcoming, and it still is.

“After the confidence course I could go up to people and talk to them – it helped me so much.

“I have made a lot of friends, more than I thought I would. I have changed.

“Since becoming an adult, The Brain Charity has been the best support other than my family.

“Talking to people going through the same thing as me, I can hear how other people are doing and help them out as well.”

The symptoms of Adult Onset Leigh Syndrome can include seizures, memory loss, difficulty with speech, sudden muscle spasms and fatigue.

In Jane’s case, the condition caused encephalopathy, damage to the brain which was so severe she had to relearn to read and write.

Due to her Leigh Syndrome, Jane finds it hard to go outside, and said without The Brain Charity the COVID-19 lockdowns would have been a struggle.

During the pandemic she attended the charity’s digital social activities via online video call with her parents and occasionally her Westie, Pickles.

She said: “Without The Brain Charity, the lockdowns would have been a struggle.

“When we go out, we have to plan and go when there aren’t any crowds because that can cause a seizure and will wreck the outing.

“I rely on my dad, Al, to drive, so if he can’t get me there I can’t go.

“When you’re face to face with a lot of people it can be overwhelming but when I’m sat in my dining room in my own surroundings on a video call, it’s easier.”

Categories: COVID-19, Social activities

Published: 15 March 2021

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