Have you had surgery for EDS or HSD outside the UK?  Please help.

We would be grateful if you would consider filling in the questionnaire found by clicking or copy and pasting the link below. It is for people who live in the UK, have Ehlers Danlos (EDS) or Hypermobility Spectrum Disorder (HSD) and have had surgery outside the UK for their EDS/HSD.  There is a lot of debate in the medical profession regarding the use of some of these operations, and anecdotal reports reach us of people who have been helped by surgery, but also of others who have had significant complications or required multiple operations with little benefit. There is very little data published to support either that these should or should not be done.  

This short questionnaire will only take a few minutes of your time but long term could benefit people from the UK who have spinal or cranial conditions related to EDS or HSD. The questionnaire aims to try to obtain data on the extent of the problem to see if you have been helped with your condition. Your data will be fully anonymised. By completing the questionnaire, you agree to the data submitted being used for future publications and presentations.  

Link: 

https://docs.google.com/forms/d/e/1FAIpQLSekS4UGRRbcUQBKFqwDMpa6M3DA2WfU9pb7jsaEAetUyVcTng/viewform?usp=sf_link

Andrew Brodbelt, Consultant Neurosurgeon, The Walton Centre NHS Foundation Trust

Mark Radon, Consultant Neuroradiologist, The Walton Centre NHS Foundation Trust

Harry Sharples, Medical student, Liverpool University.

Contact for questions.  [email protected]