I have been diagnosed with craniocervical instability and atlantoaxial instability. This happens frequently in EDS sufferers - the ligaments holding up the neck and skull become too lax, putting pressure on the brainstem. This causes me to suffer distressing symptoms such as -
-Visual disturbance (like looking through a kaleidoscope)
-Tingling and numbness in my neck, arms and hands.
The top specialist surgeon in Europe has told me I need surgery to fuse my neck and skull, to stabilise the bones and prevent the symptoms. The NHS rarely provides this specialist surgery, meaning I need to raise £65000 to pay for surgery with Dr Gilete in Barcelona, one of the few surgeons in the world with the skill and expertise to carry out such surgery on EDS patients.
It is theorised that in some cases, craniocervical instability can be the cause of ME. Severe ME sufferers have had their ME go into full remission after this surgery. If there’s any chance whatsoever I could have my life back, I have to take it. Without surgery, I will continue to get worse. I’m already having trouble breathing and swallowing, and my headaches are getting more severe. Untreated, this could lead to seizures and even death. I need this surgery as soon as possible. So I’m pleading, please donate whatever you can to my surgery fund, and share this page on social media. I’m counting on this, it’s my only hope.
Breakdown of funds needed -
Surgery - €68650
Accommodation - €3135
Travel - £500
DonationsSee top donations
- Ellie Swain
- Katie Browne
- Ayelet Spertus
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