More about EDS

Fiona has Ehlers-Danlos Syndrome, a rare genetic disorder of connective tissue which is very painful and debilitating. The collagen which makes up the connective tissue is weak, resulting in loss of strength of the skin, bones, joints and blood vessels.

Symptoms depend on the type of EDS and it can be a life threatening condition.

Moderate to severe pain throughout the body is a common everyday occurrence, starting early in life and worsening over time. When the collagen in the ligaments is affected it results in the joints being loose and unstable. They are very prone to swelling, sprains, hyperextension, dislocation and osteoarthritis. Even everyday activities, that many take for granted, can cause dislocations. For instance, the simple act of opening a door can cause a shoulder to dislocate or getting up from a chair might result in a dislocated hip.

When the collagen in the skin is affected, the skin is typically velvety soft and excessively stretchy. It is also very fragile and bruises easily. Injuries heal slowly and poorly, leaving wide scars. When the collagen abnormality affects the arteries they can rupture or aneurysms can develop. There may also be fragility of the intestines, uterus and foetal membranes which can have severe repercussions. Other symptoms of EDS include problems with the valves of the heart, organ rupture, hernias, spinal deformity, nearsightedness and weakness of the voice.

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