EDS UK member Mandy McCreight on next week’s DIY SOS

We were sorry to hear today of the death, on 14 June 2023, of Emeritus Professor Peter Beighton, whose work (together with his wife's) led to the Beighton score, a method to assess joint hypermobility. Professor Beighton’s lifelong research involved inherited disorders of the skeleton and connective tissues and other genetic conditions and he was a medical advisor to EDS UK until 2016.

British and Irish neurosurgeons are holding a one day meeting at the end of March dedicated to hypermobility of the spine in connective tissue disorders. We particularly welcome this event as progress on agreeing an approach to treating craniocervical (CCI) and atlantoaxial instability (AAI) in people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) in the UK has been very slow. 

A GP in Northumberland is leading research in the area looking at how many people have an Ehlers-Danlos syndrome (EDS) or a hypermobility spectrum disorder (HSD) and how this impacts their use of the healthcare system. Lead researcher Dr Ben Frankel, who has a personal interest in EDS, is leading a team looking at how many people on Northumberland GP databases have EDS or HSD. The team will then link this information to hospital data to look at patterns of inpatient stays and outpatient and A&E attendance.

We were very disappointed to be told just before Christmas that the Royal College of GPs (RCGP) wants to withdraw the EDS toolkit for GPs. The College plans to remove the toolkit from the RCGP website at the end of January. We are calling on the College to reconsider its decision and to continue to host the toolkit for a further 18 months.

It is understandable that people with EDS and associated health challenges are worried about their risk of contracting the new coronavirus which causes the illness COVID-19. As the virus is newly identified, there is very little known about how it affects people and there is no specific advice for people with EDS. It is not proven that people with EDS are any more likely than others to catch or become ill from viruses. Therefore we advise following the NHS's advice on social distancing, hygiene and what to do if you have coronavirus symptoms.