DAVID GREENE, HOST:
Millions of women are suffering from a disease that poses as obesity. Most patients don't know they have it. Most doctors haven't heard of it. Dieting doesn't work because the patients have abnormal fat cells that just never go away. Lesley McClurg from member station KQED in San Francisco reports.
LESLEY MCCLURG, BYLINE: In college, Judy Maggiore remembers looking in the mirror, perplexed by her body's disproportion.
JUDY MAGGIORE: The upper part of my body was really, really thin. You could see my ribs. I was skinny. I was a stick.
MCCLURG: But from the waist down...
MAGGIORE: There were two of me or something. It was really heavy.
MCCLURG: Legs that look like tree trunks and a slim upper body are the signature characteristics of a disease called lipedema, but Maggiore didn't know that at the time. She swore off bathing suits and started exercising fanatically.
MAGGIORE: And everybody else in the class, you know, their legs were OK, and mine weren't.
MCCLURG: And would you go to the doctor, or were you just like - in your head, like, I just better go to the gym again?
MAGGIORE: It never occurred to me to go to the doctor for this because it was - clearly there was something wrong with me. I wasn't eating the right things. I wasn't exercising correctly.
MCCLURG: Yet Maggiore tried every diet imaginable.
MAGGIORE: Atkins, Weight Watchers, Jenny Craig.
MCCLURG: South Beach, paleo - but nothing worked. Finally, last year, when she was 68 years old, lymphatic specialists shocked her with a diagnosis of lipedema.
MAGGIORE: I was like, whoa, never heard that before. They don't have a name for it, and it's not my fault.
MCCLURG: The genetic link clicked. She remembered her grandmother's dimpled, column-like legs. Over time, the disease changes the texture of the skin. It starts to feel like sand and then pebbles and then small stones. The fat cells keep enlarging and increasing.
MAGGIORE: It's like being wrapped in bubble wrap.
MCCLURG: Maggiore obsessively watches what she eats. Her daily lunch is a bowl filled with vegetables. She rips open a plastic package of organic greens in her kitchen in Oakland.
MAGGIORE: I'm putting in a few - yum-yum.
MCCLURG: And even though she usually skips dinner, the fat under her skin continues to thicken, causing chronic pain. Dr. Stanley Rockson at Stanford diagnosed Maggiore. He's one of only a handful of lipedema specialists in the world. He uses the metaphor of a bank to illustrate how the disease works. Usually, fat cells increase when you overeat and then decrease when you diet. But something goes awry in lipedema patients.
STANLEY ROCKSON: They're a very unusual bank because they accept deposits but no withdrawals. So once they accumulate material, it never comes out again.
MCCLURG: Patient estimates vary widely, with the high end of the range at 17 million women in America. Exact numbers are not available. It's hard to diagnose because there isn't a standard test. Instead, doctors rely on a physical exam and clinical history. Unfortunately, Rockson says, a lot is not known about the disease.
ROCKSON: The average doctor, just taking a poll of 100 physicians, you might find one who knows the term. And that one might not have much more to say about it than a recognition of the name.
MCCLURG: And the worst part is there is no cure. Surgery can provide relief in advanced cases.
DAVID AMRON: OK, we're going to start liposuction on the whole front part of the calves and ankles.
MCCLURG: Marlene Simpson was desperate for relief. This was a last resort.
AMRON: Lock the left leg. Lock that.
MCCLURG: Dr. David Amron sucked 24 pounds of fat and scar tissue out of Simpson's bulging legs in an operating room in Beverly Hills. When Simpson returned home to Sacramento, she felt like a new person.
MARLENE SIMPSON: It wasn't until I had surgery that I just realized that I was in a lot of pain.
MCCLURG: The pain is caused by extra weight pressing on nerves. Over time, it can be debilitating. She had tried everything from compression stockings to complete decongestive therapy before she chose liposuction. Unfortunately, her first plastic surgeon mocked her. He told her...
SIMPSON: I did not have lipedema, that I shouldn't believe what I read on the Internet and listen to these people that are promoting this mystery disorder.
MCCLURG: He's not the only one who didn't believe she needed surgery. Simpson paid $21,000 out-of-pocket because her insurance wouldn't pay.
SIMPSON: This type of liposuction, there's no long-term results, and so therefore they're not going to cover it.
MCCLURG: Her insurance deemed liposuction experimental. They require more studies showing the fat will stay off long term. The denied claims stung, revealing yet again how little the medical community knows about Simpson's disease, but at least she knows her condition is not her fault. That's a huge relief after enduring a lifetime of shame.
For NPR News, I'm Lesley McClurg in Oakland.
NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.