Emma Reinhold

I have produced a Toolkit on The Ehlers-Danlos Syndromes and the linked conditions of Mast Cell Activation Syndrome and Autonomic Dysfunction for the RCGP website, funded by the Ehlers-Danlos Support UK. I am researching and developing screening and diagnostic tools to help patients and their GPs identify these frequently missed medical conditions. 3.4% of the UK population has generalised joint hypermobility and widespread chronic pain (that's 2 Million people). The average length of time from first significant symptoms to a diagnosis in EDS is 16 years. Many will be given at least one misdiagnosis along the way. It is estimated that 95% remain undiagnosed. Of women with Postural Orthostatic Tachycardia Syndrome (one form of Autonomic Dysfunction), 75% are misdiagnosed as having a psychiatric or psychosomatic complaint. The equivalent figure for men is 25%. The average time from symptoms of POTS to a diagnosis is 6 years. THESE FACTS MUST CHANGE - I AM SETTING OUT TO CHANGE THEM - PLEASE JOIN ME!