An aspiring law student says she feels 'like a walking death sentence' after doctors diagnosed her with a terrifying brain condition.
Allesha Barnfield first realised something was wrong when her daily headaches became so crippling that she became bed bound and could not bear noise or light.
The 17-year-old, from Highfields, South Yorkshire, had been studying law but had to drop out of college when her condition became debilitating, the Mirror reports.
In September 2020, her dreams of going to university and pursuing her career were crushed when NHS doctors diagnosed her with Chiari Malformation.
The condition, which causes ligaments in the spine to be tense and tighter than usual, can cause brain tissue to be pulled into a person's spinal cord.
In the worst cases, it can lead to paralysis or so-called 'internal decapitation', which is when the ligaments connecting the skull to the spine are severed.
Petrified by the prognosis, Allesha asked doctors not to tell her how long she has before this might happen.
This condition has ruined my life," she said. "I had dreams of becoming a lawyer and going to university but I can’t go anymore.
“I spend every day confined in my room in complete darkness because I can’t bear the light.
“I find the smallest noises excruciatingly painful, even when someone is talking to me I have to ask them to whisper."
Allesha said she "broke down" when doctors informed her of what the condition could lead to.
“I asked them not to tell me how long I had based on my scans because I just don’t think I can handle knowing," she said.
"I feel like a walking death sentence.”
She said she is suffering from "crippling back pain and neck pain, sickness and fatigue".
The teen "desperately" tried to get doctors to realise how much she was suffering when her headaches worsened in 2019.
“I have had migraines before but I knew that these weren’t migraines because I could physically feel the back of my head shocking me," she explained.
“It started out as once a week but then it got to the point where it was everyday, all day.
“I took myself to the doctors and I was desperately trying to get people to believe me and listen to me.
“I felt like I was being treated like a child, which I know I am but I also know my own body."
Allesha said she eventually found a GP who listened and they referred her for an MRI and to a neurosurgeon.
She was diagnosed with Chiari Malformation and set about researching her condition on the internet.
Allesha, who lives with her sister, said she is not eligible for surgery on the NHS, but her searches led her to a clinic in Barcelona, which is offering a new surgery that can eliminate the condition altogether.
In the UK, surgeons use a method called decompression surgery whereby a piece of bone is removed from the spinal cord to relieve the pressure - but there is a risk that the tension will build up again causing the same problem in future.
At the Filum System clinic, Spanish doctors say their minimally invasive technique allows them ‘eliminate the root cause and stop further progression of the condition’.
However, the costly procedure will set Allesha back around £23,000, a price that she is unable to cover herself.
Desperate to get the surgery she needs, she set up a GoFundMe to cover the costs.
“Before this started I was about to start volunteering in a law firm and I was at college but I had to quit," she said.
“From the very beginning I have been dealing with this by myself.
“To get this surgery and have my life back would mean everything, I just want to be alive.”
The Mirror said the NHS has been approached for a comment.
