The Ehlers-Danlos Support UK

Registered Charity Number: 1157027
Borehamwood, Hertfordshire

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What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue condition characterised by skin extensibility, joint hypermobility and tissue fragility. There are six different types of EDS and they are classified according to signs and symptoms.

EDS is caused by a defect in a protein called collagen. There are more than 30 different types of collagen and it is the main building block of the body providing strength and support. Examples of areas it affects are ligaments, tendons and organs. Consequently, when the collagen itself is defective, it can produce many problems throughout the body.

The prevalence of EDS is known to affect both males and females of all races and ethnic backgrounds. The exact incidence is not known, but is estimated at 1 in 5000, however, research is showing that it is more common.

Diagnosis is based on the presenting symptoms and family history of a patient. Many EDS sufferers, however, do not fit conveniently into the definition of a specific type, and are frequently misdiagnosed.

A skin biopsy may be taken to confirm the diagnosis and determine the type. Of the six types of EDS, the Hypermobility type is the only one that does not have a specific test. In the other five cases, the specific gene mutation has been identified and can be tested for.

The prognosis depends largely on the type of EDS the patient has. Life expectancy in the Vascular Type (formerly type lV) is generally shortened to around 40 years due to the rupture of large blood vessels and the major organs. Pregnancy can be life-threatening in the Classical (formerly types I and II) and Vascular Types. In most of the other types of EDS life expectancy does not tend to be shortened.

Keeping us all connected

Ehlers-Danlos Support UK is a registered charity supporting people who suffer from Ehlers-Danlos Syndrome (EDS).

There are over 30 types of collagen in the human body so EDS is very difficult to diagnose. Thatís one of the biggest challenges that faces EDS sufferers.

EDS UK is here to support people who have EDS, educate those who need to learn more, and raise funds to enable further research and development.

Contact Us

The Ehlers-Danlos Support UK PO Box 748

Phone: 020 8736 5604

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Financial Information from CharityFinancials

March 2018 March 2017
Total Income £393,082 £363,376
Total Expenditure £426,692 £369,936

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