Do you have Ehlers-Danlos Syndrome (EDS)? We are looking for people who have experience of rare forms of EDS to help us raise awareness, improve treatment and the quality of life of people with EDS in Wales.
Please contact us on firstname.lastname@example.org if you would like to share your experience or join our EDS campaign group.
The Disability Advice Project (DAP) is working with health organisations in Wales to improve the understanding and treatment of EDS.
DAP has produced a report describing the experiences of people with EDS. Participants in the report believed diagnosis and treatment in Wales is poor due to:
- A lack of diagnosis facilities in Wales
- A lack of knowledge among GPs and those treating people with EDS
- A lack of knowledge of the side-effects of EDS
DAP’s report was presented to the Chair of the Welsh Rare Diseases Implementation Group, Dr Graham Shortland. DAP has also written to the Aneurin Bevan University Health Board.
Tony Crowhurst, Access Officer at DAP, said: “We continue to raise awareness of the issues surrounding the diagnosis and treatment of EDS in Wales. We are contributing to several initiatives.
“We welcome the launch of the UK Rare Diseases Framework, which commits to levelling treatment pathways across the UK for rare and undiagnosed conditions, including EDS. We hope this will result in action.
“We are also pleased to see that health services in Wales will be included in the evidence-based enquiry: Locked out: liberating disabled people’s lives and rights in Wales beyond COVID-19, published on 2 July. This refers to the need to use facilities in England, if unavailable in Wales. We have lobbied for this for the treatment of EDS.
“It is estimated that 3.5 million people in the UK will be affected by a rare condition in their lifetime. Many rare conditions require treatment by a range of specialities. We need multi-disciplinary consultancies.
“We have taken part in a consultation by Aneurin Bevan UHB on centralising resources for cardiovascular services. We feel this approach would benefit patients with EDS, as all medical staff would be available at a single location thereby increasing expertise and promoting better treatment pathways.
“We are also contributing to a consultation on the provision of musculoskeletal services, which includes EDS.
“Furthermore, we are delighted to have been asked to contribute to the training courses for healthcare workers run by Wales Gene Park.”
EDS (Ehlers-Danlos Syndrome) is a hidden disability. There is no known cure.
EDS are a group of 13 hereditary disorders that affect the connective tissue of the body. They usually involve the lack of collagen. Connective tissues provide strength and flexibility to the skin, bones, tendons, ligaments, blood vessels and other organs.
People with EDS often suffer long-term pain, chronic fatigue, dizziness, palpitations, digestive disorders and regular dislocation of their joints.