Welsh Teenager Describes Her EDS Pain

Phoebe Bruce helps spread EDS awareness by explaining her painful EDS symptoms to the media. Constant dislocations makes it difficult to cope with what should be simple and routine daily activities. The Huffington Post reports her story:

“The teenager from Wales has a rare genetic condition called Ehlers-Danlos syndrome which means the collagen in her body is too weak to hold her limbs in place.

According to the Flintshire Chronicle, Bruce once suffered 18 dislocations in one episode and experiences at least one dislocation every single day.

Bruce, who was diagnosed a few months after birth, inherited the condition from her father who has the same genetic disorder but in a much milder form.

The brave high schooler said she has learned to cope with her condition throughout the years.

In school, Bruce is helped by teaching assistants and she gets around in a wheelchair. The teenager has also learned to pop some of her limbs back into place.

“It’s really painful, but I just have to get on with things,” Bruce told the Mirror. “That’s what I do. Putting my limbs back in is quite hard to do, but I switch my brain off and don’t think about what I’m doing. Popping a dislocation back in hurts twice as much as when it comes out. I don’t know how I do it.”

Despite her pluck and perseverance, however, Bruce said that things have been getting much worse over the last few months — and she’s getting desperate to find a way to alleviate the agony.

“I don’t get frustrated, but it’s hard to put up with how it affects my life. I really need someone to come and help me soon,” she told the outlet.”

Bruce is thankful for the support and inspiration she receives from her father, who also has EDS.

CLICK HERE for the original story

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