1.

RECOGNITION

In March 2017 some significant changes were made to the way the Ehlers-Danlos syndromes are classified and diagnosed. Thirteen types of EDS are now recognised, most of which are very rare.

2.

CAUSES

The gene mutations causing the conditions have been identified, and can be tested for, in all types except for the most common type, hypermobile EDS.

3.

CONNECTIONS

The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks.

4.

STRETCHINESS

In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS but usually a form of collagen – to be fragile and stretchy. This stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed.

5.

VISIBILITY OF SYMPTOMS

As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability.

6.

SYMPTOMS

Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family.

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