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Ehlers-Danlos Support UK

Ehlers-Danlos Support UK (EDS UK) is a charity dedicated to providing support, raising awareness and improving the quality of life for people living with the Ehlers-Danlos Syndromes.

The Ehlers-Danlos Syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue (collagen). As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms. These are complex syndromes affecting many systems of the body at once, however, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders.

While our focus is EDS, we welcome anyone whose symptoms cross over with it who can be helped by what we do. We run the only helpline in the UK specifically to help anybody touched by EDS and at a local level, our network of volunteers run local support groups and regional facebook pages to help families, friends and patients.

Who to contact

Contact Name
Kelly McKinstry
Contact Position
South London Area Coordinator