Kiwis plagued by Ehler-Danlos told it’s ‘all in the head’

Posted August 28, 2016

Published in Well & Good, 8/28/2016

It wasn’t the first time. A month earlier, it had come loose while he was playing cricket. Another time, he was out to dinner when he felt as if his jaw was falling out of place.

The 18-year-old who was once an aspiring sportsman has Ehlers-Danlos syndrome.

The condition is genetic, and could affect about one in every 5000 people in New Zealand. But it is often misdiagnosed — if at all — and district health boards have no protocol in place to treat patients with the syndrome.

Rachel Palmer is unable to walk and suffers severe pain.

Rachel Palmer is unable to walk and suffers severe pain.

The syndrome causes abnormal collagen synthesis, which means that although the body produces it, the collagen is weaker and causes the joints and its connective tissue to become loose.

Auckland-based Dr Fraser Burling, an expert in chronic soft tissue injuries, said he was currently treating about 40 patients with the syndrome.

Burling said one of the most common signs of Ehlers-Danlos was hyper mobility – great flexibility – and stretchy skin, and some patients may bleed easily.

If a patient’s joints were treated roughly, it could cause them to become dislocated or cause an extreme amount of pain.

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