Woman, 25, 'living in hell' with rare condition which causes brain to slip down spine
The student's life changed following a rare diagnosis after an ice-skating incident
Featured Image Credit: PA Real Life
Harley Young
Emily Balfour was once your typical active teenager but, these days, she is mostly bed bound due to a debilitating diagnosis.
Following an ice-skating accident at age 14, Emily was taken to the doctors where a plethora of health problems were discovered. Over the years Emily has been left suffering and in "relentless levels of pain".
In 2011, she was diagnosed with Ehlers-Danlos syndromes (EDS) - a series of rare conditions that cause issues with connective tissues and make joints prone to dislocation.
Advert
Since then, Emily has also been told that she has craniocervical instability (CCI) which means that the area between her skull and spine is dangerously unstable.
The most concerning part is that her brain is now slipping down her spine. The condition, known as Chiari malformation, means the lower section of her brain has herniated and began to push down into the top of her spinal column.
A post shared on Instagram by PubityLatest reads: "Emily Balfour fell over while ice-skating, and it destabilized her spine. One of her injuries causes her brain to bulge through her skull, causing severe pain and periods of paralysis. She is raising money for a procedure to avoid being eventually paralyzed."
Devastatingly, Emily's dream career in the film industry has been placed on hold as she's not well enough to finish her degree or work.
"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, describing the issues she has faced both physically and mentally.
"I have limited vision, I can't see out of my left eye and I have recently dealt with limb paralysis."
Due to the damage caused to her brainstem, Emily suffers from extreme fatigue, loss of vision and even periods of paralysis on a daily basis. The symptoms have left Emily largely bed bound, meaning the hospital has become a second home.
Her excruciating condition threatens her with irreversible physical disabilities and possible death should it get worse.
"I've seen people with these conditions lose function of their arms completely and that obviously concerns me because I live by myself." said Emily, adding "I want to keep my sense of agency but it's getting more and more difficult."
She is now urging people to help her raise the funds for lifesaving treatment in the US, which could help stabilise her skeleton.
The treatment, known as PICL, consists of injecting stem cells into the spine through the back of the mouth. However, it comes with a huge price tag of £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.
"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 continued to explain, adding that the more she moves her neck the worse the pain becomes.
"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 believes that getting the life changing treatment will "change everything", adding that she "can't even do basic things like watching TV" any more due to her brain and vision issues.
"I just want to be able to complete my degree and have a normal life and not be stuck in this living hell."
You can donate to Emily’s fundraiser here.