Ehlers-Danlos Support UK has a vision that everybody with Ehlers-Danlos Syndrome (EDS) will have the necessary support and appropriate medical care so they are not left to struggle alone. The foundation works to improve their quality of life by raising awareness of the syndrome and by providing assistance through support groups.
Ehlers-Danlos Support UK supports raising awareness and providing support to people with Ehlers-Danlos syndrome through:
- Providing essential management and medical information to people with the syndrome.
- Raising awareness in medical communities and the general public.
- Developing support groups in local areas.
- Providing a free helpline that provides vital information and support to people with EDS.
- Arranging fundraising events to fund activities.
Ehlers-Danlos Support UK funds projects that involve support services and research activities related to improving the lives of people in the United Kingdom who suffer from Ehlers-Danlos syndrome.
Some of the most significant projects undertaken by Ehlers-Danlos Support UK are:
- Support Groups – Over 50 EDS support groups are functioning around the United Kingdom. The groups provide friendly and safe environments to people with EDS and give them a space in which they can meet others with EDS and learn from one another.
- Research – Research is undertaken in areas such as pain management, autonomic dysfunction and the relation between EDS and gut health. There is also a special focus on how young adults are experiencing the syndrome.
- Events – A range of events are regularly arranged including adrenaline events, in which people parachute from 12,000 feet to raise funds for the foundation, running and walking events, cycling events, triathlon events and ultra-challenge events, which are 100km challenges. Events are arranged to raise funds and to create awareness of EDS.
The Foundation's History
Ehlers-Danlos Support UK was founded in 1985 and officially registered as a charity in 1992. The foundation was launched with the goal of raising the profile of Ehlers-Danlos Syndrome, a syndrome which is a group of 13 genetic conditions that affect the body’s connective tissue. People with EDS may have one or many types of EDS including Classical EDS which is characterised by joint hypermobility and stretchy skin, Vascular EDS which is characterised by arterial weakness and hollow organs, Kyphoscoliotic EDS which is characterised by poor muscle tone, hypermobile joints and stretchy skin and Dermatosparaxis EDS which is characterised by saggy, redundant and fragile skin. Ehlers-Danlos Support UK is the only registered EDS charity in the United Kingdom.