From NPR:

“I was skinny. I was a stick. The upper part of my body was really, really thin. You could see my ribs!” exclaims Maggiore. “But from the waist down, it was like there were two of me or something.”

Tree-trunk-like legs and a slim upper body are the signature characteristic of a lipedema patient. You can starve yourself and exercise for hours a day and the fat will not regress. But Maggiore didn’t know that at the time. She swore off bathing suits and hit the gym fanatically.

Even though she was mystified by her body, she didn’t consider going to the doctor. “Clearly, there was something wrong with me. I wasn’t eating the right things. I wasn’t exercising correctly.”

She tried every diet imaginable, from Atkins to Weight Watchers to Jenny Craig. Nothing worked.

Finally, last year — when she was 68 years old — a lymphatic specialist shocked her with a diagnosis of lipedema.

“I was like, ‘Whoa!’ ” exclaims Maggiore. “I’ve never heard that before. They have a name for it and it’s not my fault!”

Lipedema is a lymphatic disease that is thought to affect 10 million to 17 million people in America, mostly women. Exact patient estimates are not available because it’s hard to diagnose. In fact, many lipedema patients don’t even know they have it. Neither do their physicians, who often assume their patients are obese. Plus, doctors often confuse lipedema with lymphedema — a prevalent lymphatic disease that presents similar symptoms. Maggiore says every doctor she saw throughout her life told her she needed to lose weight.

There isn’t a standard exam like a blood or urine test for lipedema. Instead, doctors use physical clues, like the unusual texture of the skin. It starts to feel like sand, then pebbles, and then small stones. The fat cells keep enlarging and …

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