Student 'living in hell' as rare condition causes brain to slip down spine
Once a sporty and active teenager, Emily Balfour is now mostly bed bound.
A trip to the doctors after an ice-skating accident when she was 14 uncovered a cascade of health problems that now see her suffer from 'relentless levels of pain'.
The incident in 2011 saw her diagnosed with Ehlers-Danlos syndromes (EDS) - a collection of rare conditions affecting the connective tissues that make her joints unstable and prone to dislocation.
Emily, now 25, was told she also has craniocervical instability (CCI), meaning the area where her skull and spine meet is dangerously unstable.
Emily pictured as a little girl, years before she started suffering from symptoms (PA Real Life)
Emily, right, is now mostly bed bound due to her condition (PA Real Life)Horrifyingly, her brain is now slipping down her spine due to a condition known as Chiari malformation - whereby the lower part of her brain has herniated and is pushing down through the top of her spinal column.
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Emily's dreams of working in film have been shattered given she isn't well enough to complete her degree or hold down a job.
"I'm not able to participate in life, I'm unable to work and I keep having to delay the completion of my degree," Emily said.
"I have limited vision, I can't see out of my left eye and I have recently dealt with limb paralysis."
Emily says her brainstem has been damaged to the point where her body is not functioning, and she suffers daily from extreme fatigue, periods of paralysis and loss of vision.
As a result, Emily now finds herself largely bed-bound and is regularly in and out of hospital.
Emily is living with 'relentless levels of pain' (PA Real Life)
The 25-year-old is now regularly in and out of hospital (PA Real Life)She suffers from excruciating symptoms which threaten irreversible physical disability and potentially death.
Earlier this year, Emily was rushed to hospital after her left arm became paralysed and swollen.
She said: "It looked like a dead person's arm, I feared I'd never regain mobility of it.
"It turned out I was struggling with blood flow to the arm, and I've regained limited use of my arm, but I'm high risk of it happening again.
"I've seen people with these conditions lose function of their arms completely and that obviously concerns me because I live by myself.
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"I want to keep my sense of agency but it's getting more and more difficult."
She is now pleading for help to raise funds for lifesaving treatment in the US to stabilise her skeleton.
The innovative treatment, called PICL, is a procedure that injects stem cells into the spine through the back of the mouth - but it costs a staggering £200,000.
"My health is continuing to deteriorate but I still haven't managed to raise enough money to get the treatment I need in America," Emily said.
Emily is desperately fundraising for potentially life-saving surgery (PA Real Life)
Emily has been suffering with extreme pain from multiple conditions since her teens (PA Real Life)"It would be lifesaving for me and, unless I get the treatment, my life is on pause and stagnated, I've become largely bed bound.
"And this issue doesn't just affect me, there are so many people with this condition who are struggling to get funds for treatment abroad. Money is the barrier for us being able to live our lives."
She added: "I'm in relentless levels of pain and, the more activity I do where I'm moving my neck, the worse the pain is.
"If I don't get treatment then it's looking likely that eventually I will lose the use of one or both of my arms.
"The longer it goes on, I'm losing more and more years of my life."
Emily also hopes more research into EDS will result in more treatment options becoming available.
The procedure is a lifeline for her and so many others and would enable her to start living again.
"Getting treatment will change everything," she added.
"I used to be so passionate about movies and reading, but because of my brain and vision issues, I'm restricted to audiobooks now. I can’t even do basic things like watching TV, that once brought me so much joy.
"I just want to be able to complete my degree and have a normal life and not be stuck in this living hell."
To donate to Emily’s fundraiser, visit: www.gofundme.com/f/urgent-treatment-for-emily.
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