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A 17-year-old British girl, Allesha Barnfield, saw her life change in 2020, following the discovery of the disease from which she suffers, the Chiari malformation. This morphological abnormality displaces the cerebellum towards the spinal cord and can sever internal ligaments, leading to “internal decapitation”. Fortunately for the young woman, a fundraiser will allow her to have surgery.
What is Chiari malformation?
A rare disease, Arnold Chiari’s malformation affects the cerebellum. The lower base of the latter engages in the foramen magnum instead of resting on the base of the skull and takes the place of the brainstem. Result: the pressure on the spinal cord and the brain increases, and causes multiple symptoms. Chiari’s anomaly”is found in 0.9% of the pediatric population”, according to the website of the Association To Help and Inform European Syringomyelics Reunited (APAISER). Fortunately, symptomatic cases are rare and most of the time, the person suffers from this anomaly but is unaware of it.
Diagnosis and symptoms
A cerebral and spinal cord MRI is the examination of choice to detect a Chiari malformation. However, there is no test or examination to certify that the symptoms experienced by the patient come from this malformation or from another pathology.
Moreover, the symptoms are of all kinds: fatigue, headaches, neck pain, dizziness… But also urinary disorders, loss of sensation in the legs, etc. It all depends on the degree of compression exerted on the nervous system and the severity of the malformation.
Risk of atlanto-occipital dislocation
Allesha Barnfield suffers from crippling headaches, fatigue and neck and back pain, to the point of having “the feeling of being condemned to death”, in his own words. She can’t stand daylight and noise, to the point that her loved ones have to whisper to talk to her. The ligaments that connect his skull to his spine are also threatening to rupture, which is called an atlanto-occipital dislocation, in medical jargon.
Chiari’s anomaly can also create syringomyelia, which is a cavity in the spinal cord causing sensory or motor deficits. As well as hydrocephalus, ie an excess of cerebrospinal fluid in the skull.
An operation to save his life
Ineligible for the operation within the British National Health Service, the young girl nevertheless wishes to have surgery to “regain her life”. And the appointment will finally be made on February 15. Indeed, so that she can have surgery at the Filum System Institute in Barcelona, which specializes in this rare pathology, the daily The Daily Mirror launched a fundraiser, which was a great success. No less than 56,000 pounds were collected in a few days. Something to upset the young woman. “Thousands of people have donated, some of whom I have never met. I’m so happy. It’s unreal, I can’t believe it. I hope to be back and in better health for my 18th birthday. It’s the best birthday present I could ask for !”.