Phoebe Bruce, Welsh Teenager, Suffers Up To 18 Dislocations In One Day Due To Rare Genetic Disorder

Teen's Limbs Dislocate Up To 18 Times A Day

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.

According to the Mirror, Bruce has visited the hospital more than 100 times since the beginning of the year and is now left in excruciating pain every time her arm or leg joints become loose.

The condition has become so severe over the past year that her family is now asking for funding to get her specialist treatment.

"It's heartbreaking. You don't expect your little girl to go through that pain every single day like she is," her mother, Yvonne, told ITV News.

"In the best years of her life, really. At 17, she should be out and about, doing all sorts [of things]," added her dad, Richard, who said the teen is usually confined to the house.

Yvonne and Richard said that they have been waiting for several weeks for a ruling from the Welsh Health Specialized Services Committee to see if their daughter will get funding to get tested for treatment at a specialist private hospital in London.

"It's awful. The screams coming from her every single day -- it tears your heart apart. We just want it to go away and get better," Yvonne said.

There is no cure for Ehlers-Danlos syndrome, but the Bruce family hopes that surgery may improve the girl's standard of living. Incredibly, in the face of her daily struggle, the teenager has remained undaunted.

Speaking about the connection she has with her father, who also has the condition, Bruce told ITV News that she has learned to tackle this tremendous physical challenge with a smile.

"We sort of have this bond where we tend to laugh about it, rather than cry about it. Obviously when you're in the pain, it's different -- it's hard to cope then. But on a day to day basis, if you don't laugh about it, you're gonna cry at the end of the day," she said.

According to the Daily Post, Bruce's relatives have also set up an online fundraising account for the teenager called the “The Phoebe Bruce Trust” on the website. The page is due to go live in the next few days.

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