hEDS-START study
The hEDS-START Study aims to capture the lived experiences of people with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobile Spectrum Disorders (HSD) in the United Kingdom.
Ehlers Danlos syndrome (EDS) refers to a group of hereditary connective tissue disorders that manifest clinically with skin hyperelasticity, hypermobility of joints, scarring of the skin and fragility of blood vessels. There are 13 subtypes of EDS, many of which are due to mutations in genes involved in maintenance of connective tissues.
Hypermobile Ehlers Danlos syndrome (hEDS) is a subtype of the condition. Unlike other forms, hEDS is thought to be polygenic in nature and cannot currently be diagnosed by molecular genetic testing, though work is ongoing to identify the underlying genetic basis. Where criteria are not met for hEDS or any other connective tissue disorder, a diagnosis of Hypermobility Spectrum Disorders (HSD) may be given.
The aim of the hEDS-START Project is to capture and share the lived experiences of people with hEDS/HSD by way of research, patient events, and policy engagement opportunities.
The Lived Experience of hEDS/HSD Film
- Video: hEDS
- Medium video
A film created by researchers and participants of the "Translating Research Into Change" patient engagement event at the IGC on the 8th February 2024
Translating Research into Change report
This report gives a updated description of hEDS/HSD in Scotland.
Click here to read the 'Translating Research into Change' report
Scrapbook of Lived Experiences
The scrapbook was compiled by those living with hEDS or HSD to give insight into their lives and the condition.
Click here to read the 'Scrapbook of lived experiences'
Patient Engagement Day
For more information about the project please email Kathryn.Berg@ed.ac.uk
