15 year old Mya Hurst works with Helen Keogh of Kindly Move Physiotherapy in the Hydrotherapy pool in Murwillumbah. Photo: John Gass / Tweed Daily News
15 year old Mya Hurst works with Helen Keogh of Kindly Move Physiotherapy in the Hydrotherapy pool in Murwillumbah. Photo: John Gass / Tweed Daily News John Gass

Mya lives with pain

MYA Hurst suffers from a condition that no teenager, or anyone for that matter, should have to live with.

The 15-year-old has Ehlers-Danlos Syndrome Type 3, a rare and incurable condition that hampers the production of collagen, the body's "glue" in connective tissue crucial to the strength of skin, joints, muscles, ligaments and blood vessels.

The type of the disease affecting Mya is extremely complex and causes her joints to dislocate, often more than 20 times a day.

Whenever she sneezes or laughs, she dislocates her ribs.

Even brushing her teeth can cause her wrists to dislocate, an excruciatingly painful "popping" out and in and of the joint that causes ligament and soft tissue damage.

When she was four, Mya broke her elbow, the first of 10 broken bones and hundreds of dislocations.The Nunderi teenager has not been able to walk unassisted for two years and needs 24-hour care. She lives with chronic pain in her joints and is exhausted most days.

"When she's crying with the pain, it's hard to watch," her, dad Mark said.

Cruelly, Mya is unable to take pain-relief medication because she has had severe allergic reactions to a range of narcotics and analgesics. Ehlers-Danlos Syndrome is rarely life threatening, but there is no known cure.

"The news that it would be lifelong came as quite a shock," said Mya, who said her family, including her two "amazing" younger sisters, had been a "massive help" in helping her to cope with the disease.

Mark and mum Kelly have had to renovate their home and have both taken time off work to care for their daughter.

Mya applies ice packs to her joints "all the time" and has hydrotherapy in Murwillumbah. The water offers some relief and Mya said she was making progress.

"I know I can get through the pain because I go through it every day," said the brave teen, who loves drama and reading.

But Mya badly needs specialist equipment and hopes a fundraising event will allow the family to buy an electric hospital bed, an electric wheelchair and other devices and treatments.

The fundraiser is at the Murwillumbah Jockey Club on December 13, at 2pm. There will be children's entertainment, food, raffles and a silent auction.

To donate to the auction or volunteer, contact Eryn Young on 0422264086 or visit their fundraising site. 



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