A WOMAN spoke of her’relentless pain’ when her brain slides down her spine.
Emily Balfour, who suffered an accident on ice over a ten-year period ago, was diagnosed by doctors with various health conditions. These mean that she now faces permanent paralysis.
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She has spent most of her life in bed due to a condition that causes her brain and spine to slide down.
Her skeleton is in need of stabilisation and she needs help raising funds to receive life-saving treatments.
Desperate to raise the £200,000 she needs, Emily, from London, said she will eventually face permanent disability and is at risk of paralysis if she does not receive PICL, a procedure that injects stem cells into the spine through the back of the mouth.
After an accident on ice skating, Emily, then 14, was taken to the doctor in 2011.
All of them now cause Emily to now live with “relentless levels of pain”.
Her diagnosis was Ehlers Danlos Syndromes (EDS), which is a group of rare connective tissue disorders that cause her joints to be unstable and susceptible to dislocation. She also has craniocervical instabilities (CCI), where the skull meets the spine and can become dangerously unstable.
Emily has a Chiari malformation. This means that the bottom part of Emily’s brain is herniating and pushing through her spine.
The 25-year-old said: “My health is continuing to deteriorate but I still haven’t managed to raise enough money to get the treatment I need in America.
“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.”
Emily, once a very active and sporty teen is now mostly confined to bed.
Due to Chiari malformation, Emily’s brain is pushing down through the top of her spinal column and she said medical specialists have informed her that some of her brain is no longer in her skull.
Emily used to dream about working in the film industry, but is not able finish her degree. Her health is making it difficult for her to continue to work.
She said: “I’m not able to participate in life, I’m unable to work and I keep having to delay the completion of my degree.
“I have limited vision, I can’t see out of my left eye and I have recently dealt with limb paralysis.”
Emily’s left arm was paralysed, and it grew swollen. She went to hospital.
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.
“I want to keep my sense of agency but it’s getting more and more difficult.”
Emily says that the damage to her brainstem causes her daily fatigue, paralysis and vision loss.
Emily suffers excruciating pain that could lead to irreversible disabilities and even death.
Emily’s life will change forever after she receives a new treatment to stabilize her skeleton in the US. But it is not free.
She hopes to raise £200,000 for multiple stem cell treatments, medical care and accommodation in Colorado, USA, where she will undergo a procedure known as PICL to repair and strengthen the ligaments that keep her skull stable.
A 25-year old has started a business. GoFundMe To pool funds together for treatment.
She said: “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 dreamed of working as a filmmaker before her diagnosis. She attended the BFI Film Academy when she was a teenager.
Her plans to travel were also put on hold after she finished her English degree.
Emily said: “It’s incredibly frustrating and I have to accept that I can’t live the life I thought I would.
“I’m seeing other people my age having fun and building their careers but until I get the PICL procedure, I’m stuck.
“There are other people who are also in my situation and it’s not an easy journey but I just hope that these treatments will be easier to access closer to home so we can get back to living.”
Emily hopes for more EDS research to lead to better treatment options.
Emily says that the surgery will give her a new lease on life and allow her to begin living once more.
“Getting treatment will change everything,” she said.
“I wanted to write and make films, but I am now more interested in medicine and want to get a psychotherapy qualification and work in that field.
“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.”