Dervil Dockrell and Kathryn Berg named 2023 Ehlers-Danlos Support UK Community Champions
The researchers were honoured at an award presentation at the Institute of Genetics and Cancer.
Kathryn Berg (Trial Manager) and Dervil Dockrell (Clinical Specialist Occupational Therapist) are part of Stuart Ralston's research group, which is based at the Centre for Genomic and Experimental Medicine.
Ehlers-Danlos Support UK (EDS UK) explained that Kathryn and Dervil were presented with the 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 series 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), which is 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 both 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 hEDS patients 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 CMVM 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.”