Debilitating Ehlers-Danlos disease causes teen Mya to dislocate up to 20 joints a day

EVERY time Mya Lilly Hurst brushes her teeth she dislocates her wrists.

She dislocates up to 20 joints a day – her shoulders, jaw, collarbones, elbows, wrists, fingers, ankles, hips, knees and toes – but the worst is her ribs, which dislocate every time she laughs.

In her 15 years she has suffered 10 broken bones and hundreds of dislocations and subluxations. Now in a wheelchair requiring 24-hour care, the northern NSW teen suffers a rare and debilitating illness that causes her joints to easily and constantly dislocate and fracture, of which there is no known cure.

The condition is known as Ehlers - Danlos and hers is extremely complex and severe – and to add insult to injury, she is allergic to the pain relief that could help ease her constant suffering.

“The easiest way to explain my condition is that my body has faulty collagen - collagen is best described as the glue that keeps your body together, and without it, all my joints from head to toe dislocate endlessly, and the pain is debilitating,” said Mya, from Tweed Heads.

“I now have developed chronic regional pain syndrome in majority of my joints on top of the chronic pain that comes with the syndrome itself - most sufferers can take pain relief to assist in managing their pain, sadly I have severe allergic reactions to pain relief.

“These days I can’t even brush my teeth without my wrists dislocating, my dislocations are quick, my bones pop in and out in seconds, but it is the aftermath of ligament and soft tissue damage that each dislocation causes that leaves me in so much pain.”

Mya’s first injury came when she broke her elbow in two places at the age of four, and after a decade of no answers, she was diagnosed with the illness in April of this year.

“From the age of four onwards I began to constantly break bones, which all occurred from minimal injuries such as dancing, school yard games and generally just playing around as kids do,” she said.

“While all my friends were having fun and hanging out, my primary school years quickly turned to endless doctor’s appointments, specialist visits and hospital stays with my parents who were desperately searching for answers.

“When I turned 12, things got even worse. I started tearing my ligaments daily. Just walking along flat ground and picking up a glass of water, the simplest, smallest things became so challenging.

“Finally in April, after years of riding the medical rollercoaster, and infinite sleepless nights for my mum roaming the Internet, we believed we knew what we were facing and that all the pieces of this awful puzzle had come together.

“I remember sitting in the car on the way home just sobbing and thinking I can’t believe there is no cure for this evil illness.”

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