In 2017 the diagnostic criteria for Ehlers-Danlos Syndrome changed and there are now 13 defined types. By far the most common is Hypermobile EDS (hEDS) yet this is the only form for which no gene has been identified, so The Ehlers-Danlos Society have decided to enroll 1000 patients who fulfil the 2017 criteria for hEDS in a genetic study to try and find the gene(s) responsible. This would be a huge breakthrough not only in our understanding of hEDS but also as an aid to diagnosis.
As far as I’m aware, the study is using patients from both the USA, Europe and the UK and I am delighted to say I have been accepted as a participant 🙂 I will be travelling up to Edinburgh at the start of November for my blood draw. It’s a 3½ hour return journey for me and there are no travel expenses, however I feel it’s too important an opportunity to miss so despite the huge effort involved I am very much looking forward to taking part.