The researchers were honoured at an award presentation at the Institute of Genetics and Cancer: November 2023 Image Kathryn Berg (left) and Dervil Dockrell (right) Kathryn Berg (Trial Manager) and Dervil Dockrell (Clinical Specialist Occupational Therapist) are part of Stuart Ralston's research group at the Centre for Genomic and Experimental Medicine.Kathryn and Dervil were presented the Ehlers-Danlos Support UK (EDS UK) Community Champion Award for their "contribution to furthering research and supporting those with the Ehlers-Danlos syndromes and hypermobility spectrum disorders in Scotland”. Ehlers-Danlos syndromes are a group of genetic conditions which affect the connective tissue of the body, making it more fragile. People with EDS can have a wide variety of symptoms, depending partly on which genetic mutation they carry.Hypermobile EDS (hEDS), one focus of Kathryn and Dervil's research, is the only subtype with no known genetic cause.EDS UK has been running for over 30 years and provides local support groups for people with Ehlers-Danlos Syndrome and communications for the EDS community. In addition, they interact with policy makers and fund research projects.Kathryn and Dervil first became involved with hypermobility research while producing a paper in 2021 on the experiences of Scottish therapists with hypermobile patients (link below). They have since been invited to give a lecture to University of Edinburgh nursing students and present their work at the Scottish Society for Rheumatology spring meeting. Dervil and Kathryn are also members of the Cross-Party Group on Arthritis and Musculoskeletal Conditions at the Scottish Parliament where they support members of EDS UK.They presented their 2021 paper at Holyrood in May 2023 and will attend a three-day event in the Scottish Parliament next year to raise awareness of the condition and the "lack of adequate services for patients in Scotland". They hope to publish their recent work on the lived experience of people living with hEDS in 2024, ahead of an application to National Services Division for a specialist hypermobility service to be established in Scotland. They were recently awarded funding from the University of Edinburgh's College of Medicine and Veterinary Medicine Impact Team to conduct focus groups with patients and researchers to underpin this application. “We are delighted to have won the EDS UK Community Champion award. We are the first Scottish winners of the award which is a real honour but may also highlight the need for more hEDS/HSD research in Scotland. This project started and remains to be a labour of love. We have had great support throughout from Professor Stuart Ralston to allow this work to happen.”Kathryn Berg and Dervil Dockrell LinksMind the gaps: therapists’ experiences of managing symptomatic hypermobility in Scotland - Rheumatology Advances in Practice (External)Ehlers-Danlos Support UK (External)Stuart Ralston Research Group Tags 2023 Publication date 17 Nov, 2023
