Published: 16/10/2017 Tags: Ehlers-Danlos in the News

MEDICAL MYSTERY: Everyday bumps injured her joints, but finding the reason took half a century

by Allison Bond, Originally posted by on October 16, 2017

Louise Carroll was just 7 years old when an accidental bump into a sofa turned into a major injury. Most kids might have ended up with a bruise or a scrape; Carroll dislocated her knee. Then she popped it back into place.

That is Carroll’s first memory of what would become a common occurrence: An everyday mishap causing major, and painful, damage to her knees, wrists, and other joints. Yet it took half a century — and consultations with doctors on the other side of the globe — to figure out why Carroll, now 59, was so prone to injury.

It didn’t take long for Carroll, who lives in Auckland, New Zealand, to adapt to her strangely flexible joints. As a teenager, she developed elaborate techniques using bandages and tape to anchor her legs and wrists in place.

“I learned in my late teens to wear long trousers so nobody would know I’d had to bandage my legs,” she told STAT by phone. In addition to causing dislocated joints, ordinary movement could stretch her delicate skin and tendons, sometimes leading to excruciatingly painful bleeding within the joints.

Constant joint damage soon took its toll. In fact, by the time Carroll was in high school, she needed surgery to help stabilize one knee.

Yet the worst part, she said, was that so many people — from friends and family to physicians — did not believe she was suffering.

“The pain could be tremendous,” she said. “But I had to hide it because people didn’t believe I had a problem.”

For decades, many doctors were unsure of what to make of Carroll’s stretchy skin, flexible joints, and constant pain. And starting around age 30, other health problems popped up: hearing loss, then autoimmune disorders — “a new one every decade,” she said — such as thyroid disease, which can cause weight gain and sluggishness.

Carroll said she was labeled with what she calls “quack diagnoses,” dismissive catch-alls ranging from fibromyalgia to psychiatric pain syndromes. Doctors brushed off her complaints of fatigue, for example, until tests found that her blood counts were dangerously low due to what turned out to be pernicious anemia, another autoimmune disease.

“Instead of seeing a psychiatrist, they needed to send me to a hematologist,” she said.

Carroll estimates she saw a hundred doctors in her native New Zealand, from orthopedists to rheumatologists. All failed to connect the dots of her symptoms.

Yet Carroll knew something truly was wrong, and her general practitioner did too, though he couldn’t pinpoint what. Most important, he believed her pain was real.

Almost 50 years into her saga, her doctor deduced that Carroll’s stretchy joints might mean she could have a disease called Ehlers-Danlos syndrome, or EDS. This disorder of the body’s connective tissue comes in a few varieties; one of them is characterized by extreme flexibility that causes damage to the joints. The disease affects 1 in 2,500 to 1 in 5,000 people and has no predilection for any particular gender, race, or age group.

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