Teen With Syndrome That Causes Joints To Dislocate Every Day Seeks Treatment

| by Sean Kelly

A teen in the U.K. who has a medical condition that causes her joints to constantly dislocate is seeking a life-saving treatment abroad.

Emily James has a severe form of Ehlers-Danlos syndrome, which causes her joints to dislocate regularly. The syndrome, according to Huffington Post U.K., is “a collection of inherited conditions that fit into a larger group, known as heritable disorders of connective tissue. This tissue provides support in skin, tendons, ligaments, blood vessels, internal organs and bones.” 

As a result of her condition, James routinely sleeps with casts on her arms and legs to prevent them from dislocating during the night and has had to have her jaw wired shut for months at a time.

She has contracted pneumonia 17 times and has to be fed through a tube in her stomach. The condition was discovered three years ago, when her jaw dislocated randomly. She underwent surgery to repair it but things only got worse.

“I ended up with lots of worrying problems,” the 17-year-old wrote in an open letter on her GoFundMe page — set up to help her raise money for the life-saving treatment. “My swallowing had become a big problem and wasn't safe because my muscles had become floppy, so it was unsafe for me to eat and drink safely. I struggled with my chest for months, I was given so many antibiotics that I've become immune to them.”

In late 2013, things began to get significantly worse.

“One Sunday night things changed and all of a sudden I was unable to breathe properly,” she wrote.

“My mum was beside herself. There were so many doctors, I was scared. My voice box had gone into spasms, it couldn't work properly anymore as the muscles in my vocal cords had become weak.” Doctors were unsure that they’d be able to save her, and instructed her mother, Karen, to contact family and prepare for the worst.

“That was the most heartbreaking time of my family's life,” James said. “That night we will never forget."

Now, James is seeking donations to help fund a treatment in the U.S. that could potentially save her life. The fundraising page, which has a goal of the equivalent of around $785,000 was launched in late April.

James’ heartbroken mother said her daughter would soon be able to sleep in a full body cast, and hopes that it provides at least temporary relief.

“I have heard Emily beg for the pain to stop it can be that bad. Her life shouldn't be every day in hospital,” she said. “If someone who knows anything about it can just suggest something that we could try, it could change our lives."

Sources: Daily Mail, Huffington Post UK, GoFundMe

Photo Credit: Via GoFundMe