Ehlers-Danlos Syndrome - Hypermobile Type (HEDS)
Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue condition involving skin extensibility, joint hypermobility (easy and frequent dislocation and/or subluxation) and tissue fragility (easy bruising and scarring and poor healing - wounds re-opening even if they've been stitched). There are six different types of EDS, classified according to signs and symptoms.
It's caused by a defect in collagen. There are more than 30 types of collagen, the main building block of the body, providing strength and support. EDS affects ligaments, tendons, organs, skin, teeth, nerves, gastrointestinal function and the autonomic nervous system. EDS affects males and females of all races and ethnic backgrounds. It's not known exactly how many people have EDS, but is estimated at 1 in 5000. However, research is showing that it is more common. Diagnosis is based on the symptoms and family history of a patient. There may be no family history, as EDS can be caused by a gene mutation - but if this happens, the affected person can then pass it on to their children (and then they can pass it to their children, etc.). Many EDS sufferers do not fit into the definition of one specific type, and are frequently misdiagnosed. A skin biopsy can confirm the diagnosis and the type. HEDS is the only one that does not have a specific genetic test, as the gene causing it has not been identified. In the other five types, the specific gene mutation has been identified and can be tested for. While the medical establishment states that a person can only have one type of EDS, increasing numbers of people claim to have more than one type, and a study in Devon (UK) found a family who have HEDS carrying the faulty gene causing Vascular EDS (VEDS). VEDS shortens life expectancy to around 40 years (some live a lot longer!), with death being caused by internal organ rupture. When internal ruptures happen, they can be impossible to fix as the surgeons suture (stitches) cut through the fragile tissues. |
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