Hannah Pryer suffers from a rare condition that means she falls over every time she laughs.
The A-level student has cataplexy which causes a sudden loss of muscle control. She also collapses if she gets excited or angry.
On top of excessive levels of tiredness and sleep attacks, she
suffers from cataplexy – a sudden loss of muscle control which can be
triggered by excitement, laughter, anger or surprise.
The 16-year-old has been prescribed medication to help deal with the
symptoms but the condition continues to have a huge impact on her
quality of life.
She is unable to have part-time job and spends her weekends catching up with study and sleep.
She is unable to have part-time job and spends her weekends catching up with study and sleep.
When her family heard about a pioneering drug called Xyrem – the
brand name for sodium oxybate – which has allowed some narcoleptics to
lead a normal life, they asked Hannah’s medics if she could try it.
So far, their attempts have been unsuccessful, which they suspect could
be down to the fact it costs primary care trusts around £13,000 per year
to fund.
Hannah said: “I heard that it can be brilliant for some people, but I got rejected.”
Dad, Martin Pryer, 52, added: “Like a lot of things it seems to boil down to money.”Hannah first began suffering symptoms three years ago following a bout of the flu.
Hannah said: “I heard that it can be brilliant for some people, but I got rejected.”
Dad, Martin Pryer, 52, added: “Like a lot of things it seems to boil down to money.”Hannah first began suffering symptoms three years ago following a bout of the flu.
It was only when Hannah’s worried mum took her daughter to the
emergency department of the local hospital that she was referred to
Royal Manchester Children’s Hospital.
Along with sleeping tests, specialists asked the Pryer family to film footage of Hannah collapsing.
Along with sleeping tests, specialists asked the Pryer family to film footage of Hannah collapsing.
Mr Pryer: “You have to jump through hoops to get a diagnosis.”
Despite the pitfalls of her condition, Hannah threw herself into school productions and passed her GCSE exams with flying colors.
She even planned out the day of her high school prom last summer to ensure she didn’t suffer a sleep attack.
Despite the pitfalls of her condition, Hannah threw herself into school productions and passed her GCSE exams with flying colors.
She even planned out the day of her high school prom last summer to ensure she didn’t suffer a sleep attack.
Unlike some of her friends who are turning 17 this year, having
narcolepsy means Hannah will be unable to drive.It even impacts on the
way she stands.
“I hunch my shoulders forward and I get told to sit up straight, but I think it’s almost guarding myself against a sudden emotion which might trigger the cataplexy,” she says.
“I hunch my shoulders forward and I get told to sit up straight, but I think it’s almost guarding myself against a sudden emotion which might trigger the cataplexy,” she says.

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