Putting our hEDS together for hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders

To carry out research that is meaningful for people with hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders (plus related conditions such as PoTS) and healthcare professionals.

Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most common type of EDS, alongside the related Hypermobility Spectrum Disorders (HSD). We know that 1 in 500 people are already diagnosed with these conditions although the true population prevalence is believed to be more like 1 in 30. People with hEDS/HSD might also have Postural Tachycardia Syndrome (PoTS) or related orthostatic intolerance.

We are a multidisciplinary team led by Dr Gemma Pearce. Gemma, Sally and Paul were the core team who developed this website as part of the co-created pregnancy tools with a wider co-creation team. Gemma, Sally and Emma were the founding members of the #EDSmaternity projects. Other related projects and teams also feature on the website. Ben designed the website and helps keep it going. Sabs helps to maintain the website with Gemma.