Published: 11/11/2016 Tags: Ehlers-Danlos in the News

Ehlers-Danlos Syndrome: More Than Just Stretchy Skin and Bendy Joints

When other kids tripped, they got back up. When Lara Bloom tripped, she got sent to the hospital. When other kids opened a jar of mayonnaise, they spread the contents on their sandwiches. When Bloom opened a jar of mayonnaise, she fractured her wrist. When other kids asked why she was always on crutches, Bloom wished she knew.

“I remember my friends not getting it; feeling very isolated and alone. No one understood — I didn’t even understand,” says Bloom, now a 36-year-old in London who estimates having broken her wrists 30 times in childhood. Using crutches to support her also injury-prone ankles only strained her wrists — which were eventually stabilized with pins — further. “It was just a vicious cycle of constant pain and no answer to any of the questions I had,” she recalls.

Bloom finally got an answer about 12 years ago at age 24, when she was diagnosed with Ehlers-Danlos Syndrome, a heritable cluster of disorders that can affect connective tissues like the skin and joints. More than “stretchy skin and bendy joints,” as Bloom puts it, the condition is often accompanied by symptoms including pain, fatigue, and digestive and psychological distress, as well as other chronic disorders like Postural Orthostatic Tachycardia Syndrome, or POTS. Some untreated patients may even have a greatly shortened lifespan if the condition affects their heart valves and leads to rupture. Bloom, for one, now attributes her constant childhood fractures and joint pain to the fragility of her soft tissues, which couldn’t properly support her bones.

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