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Living with a rare syndrome

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If you can imagine the position, Kaliq James can probably shape his body into it.

Except he shouldn't.

The 11-year-old has Ehlers-Danlos syndrome, a rare genetic disorder caused by faulty collagen that makes a person's ligaments and joints overly flexible.

As a result, Kaliq is easily exhausted and often has severe joint pain. He also injures easily.

“I could stick my foot over my head or twist myself into a pretzel, but I'm not supposed to do that because it is not good for my joints,” said Kaliq, who shared his story as part of EDS Awareness Month.

“My worst injury was last year. I was wearing shoe insoles that made me lose my balance. I was on the ground crying in pain. I had to go to the hospital and wear a cast. Luckily, I only had to wear it for two days.”

His mother, Sarah Robinson, didn't suspect a thing when he was born.

“He was my first child, so I had nothing to compare it to, although, looking back, I realise he was more floppy than he should have been.”

It wasn't until Kaliq was 7 that doctors diagnosed the problem.

A teacher noticed that his thumb flexed back abnormally far when he tried to hold a pencil, and drew it to his mother's attention.

Paediatrician Sylvanus Nawab immediately recognised it as EDS; the diagnosis was confirmed at Boston Children's Hospital.

“We were very lucky that Dr Nawab knew about EDS,” Mrs Robinson said. “It's such a rare condition many doctors haven't heard of it. Often when I say Kaliq has it, people have to Google it.”

There is no cure for EDS; it gets worse with age.

At the moment, Kaliq attends Impact Mentoring Academy half- days, as being a full-time student made him too tired.

His goal is to one day become a microbiologist or, if that fails, a game designer.

“In science, I am a different person,” he said. “I feel intelligent and I know about things. I would like to find a cure for EDS one day. That would be really cool.”

Mrs Robinson suspects she has a less severe form of the disease.

“I'm 31,” she said. “When I was a child, EDS wasn't really known. It wasn't as out there as it is now.

“There were always excuses for what was going on with me. I had chronic joint pain and people thought it was just joint pain. I would have chronic migraines. They'd say I was just going through puberty. It got to a point where, to get relief, I'd have to lay down on a cold tile floor because it just hurt that much.

“Doctors always said it was just part of growing up and I'd get over it. It took me to have a child that was more severe for that diagnosis to come.”

With Kaliq's experience behind her, she was able to recognise EDS in her younger son, Nathan.

“He was floppy the way Kaliq had been, but because all babies are quite flexible, it wasn't until he was 5 that doctors could say for sure that he also had EDS,” she said.

Kaliq is certain he and his six-year-old brother will have many conversations about EDS “when he's older”.

“If I were to give him advice, I'd say just because you have this condition that may make you go down physically doesn't mean you should just let it,” he said. “You just have to live with it. You can't get rid of it. You've got to deal with it.”

Mrs Robinson said Kaliq is sometimes teased by children who “don't really understand” why he can't do what they can, because he “looks normal”.

“Sometimes the EDS makes me depressed,” he said. “It's a curse. It makes you weaker and a lot slower than other children. It is hard to do activities that normal people do.”

He is hoping this story will help him connect with anyone else in Bermuda with the condition. Reach out to him here:

“I think I might be the first Bermudian diagnosed with it,” he said. “If there are others out there, I'd like to hear from them.”

EDS - the facts

Some facts about Ehlers-Danlos syndrome.

• One in 5,000 children are born with EDS.

• There are six types. Some are life-threatening and impact the veins and arteries of the body; others only impact the joints and ligaments.

• It is an inherited condition.

• Many children with Kaliq's type, type three, are wheelchair-bound.

• There is no racial or geographic predisposition to EDS.


Kaliq James loves playing video games (Photograph by Akil Simmons)
Hoping for solution: Kaliq James has Ehlers-Danlos syndrome, which impacts his joints and ligaments
Kaliq James has Ehlers-Danlos Syndrome impacting his joints and ligaments (Photograph by Akil Simmons)
Injury risk: Kaliq James shows the hypermobility in his knees caused by Ehlers-Danlos syndrome

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Published May 17, 2017 at 9:00 am (Updated May 17, 2017 at 8:45 am)

Living with a rare syndrome

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