Jemma has Ehlers Danlos Syndrome, Chiari and a severely unstable neck compressing and damaging her brain stem. She needs urgent surgery from a specialist neurosurgical team in Barcelona.
Jemma is very caring, kind 23 year old from Southampton who has a rare genetic condition called Ehlers Danlos Syndrome. The past 8 years she has been in and out of hospital with dislocations, knee surgery, severe headache attacks which leave her with stroke like blackouts, mystery neurological symptoms and severe neck pain that no Drs could explain.
After her health continued to deteriorate we contacted a support group for EDS they recommended Jemma have a specialist upright MRI scan to investigate further. In March 2018 she had the scans and sent them to a EDS specialist neurosurgeon.
He diagnosed her with Craniocervical instability, Atlantoaxial instability, Subaxial instability and cerebellar tonsil ectopia (Chiari malformation) and brainstem compression. In July 2018 We flew out to Barcelona to meet with the surgeon face to face and have more tests. The scans revealed that her whole neck is unstable. Her surgeon is very concerned with how advanced her case is and said she needs the surgery urgently to fuse her skull to her spine and decompress her brain.
The surgery is not available in the UK or on NHS for several reasons. They don’t like operating on people with connective tissue disorders because of the added risks involved. They say that there’s not enough evidence to suggest it works even though there has been several success stories from others that have had the surgery. There is a huge lack of understanding of these conditions and there is only 4 surgeons in the world qualified enough to do the surgery she needs in America and Barcelona.
Please help my daughter get the urgent life saving surgery she desperately needs to stop her condition from deteriorating.