Lipedema: The Fat Disorder That Millions Have But No One Has Heard Of
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She is in a waiting room to see her doctor to be fitted for compression bandages for her arms because eventually lipedema causes abnormal weight gain in the upper body as well. 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When on deadline she fuels herself almost exclusively on chocolate chips.\r\n\r\n ","avatar":"https://secure.gravatar.com/avatar/3fb78e873af3312f34d0bc1d60a07c7f?s=600&d=blank&r=g","twitter":"lesleywmcclurg","facebook":null,"instagram":null,"linkedin":null,"sites":[{"site":"arts","roles":["author"]},{"site":"news","roles":["editor"]},{"site":"futureofyou","roles":["editor"]},{"site":"stateofhealth","roles":["author"]},{"site":"science","roles":["editor"]},{"site":"forum","roles":["author"]}],"headData":{"title":"Lesley McClurg | KQED","description":"KQED Health Correspondent","ogImgSrc":"https://secure.gravatar.com/avatar/3fb78e873af3312f34d0bc1d60a07c7f?s=600&d=blank&r=g","twImgSrc":"https://secure.gravatar.com/avatar/3fb78e873af3312f34d0bc1d60a07c7f?s=600&d=blank&r=g"},"isLoading":false,"link":"/author/lesleymcclurg"}},"breakingNewsReducer":{},"campaignFinanceReducer":{},"firebase":{"requesting":{},"requested":{},"timestamps":{},"data":{},"ordered":{},"auth":{"isLoaded":false,"isEmpty":true},"authError":null,"profile":{"isLoaded":false,"isEmpty":true},"listeners":{"byId":{},"allIds":[]},"isInitializing":false,"errors":[]},"navBarReducer":{"navBarId":"home","fullView":true,"showPlayer":false},"navMenuReducer":{"menus":[{"key":"menu1","items":[{"name":"News","link":"/","type":"title"},{"name":"Politics","link":"/politics"},{"name":"Science","link":"/science"},{"name":"Education","link":"/educationnews"},{"name":"Housing","link":"/housing"},{"name":"Immigration","link":"/immigration"},{"name":"Criminal Justice","link":"/criminaljustice"},{"name":"Silicon Valley","link":"/siliconvalley"},{"name":"Forum","link":"/forum"},{"name":"The California Report","link":"/californiareport"}]},{"key":"menu2","items":[{"name":"Arts & Culture","link":"/arts","type":"title"},{"name":"Critics’ Picks","link":"/thedolist"},{"name":"Cultural Commentary","link":"/artscommentary"},{"name":"Food & Drink","link":"/food"},{"name":"Bay Area Hip-Hop","link":"/bayareahiphop"},{"name":"Rebel Girls","link":"/rebelgirls"},{"name":"Arts Video","link":"/artsvideos"}]},{"key":"menu3","items":[{"name":"Podcasts","link":"/podcasts","type":"title"},{"name":"Bay Curious","link":"/podcasts/baycurious"},{"name":"Rightnowish","link":"/podcasts/rightnowish"},{"name":"The Bay","link":"/podcasts/thebay"},{"name":"On Our Watch","link":"/podcasts/onourwatch"},{"name":"Mindshift","link":"/podcasts/mindshift"},{"name":"Consider This","link":"/podcasts/considerthis"},{"name":"Political Breakdown","link":"/podcasts/politicalbreakdown"}]},{"key":"menu4","items":[{"name":"Live Radio","link":"/radio","type":"title"},{"name":"TV","link":"/tv","type":"title"},{"name":"Events","link":"/events","type":"title"},{"name":"For Educators","link":"/education","type":"title"},{"name":"Support KQED","link":"/support","type":"title"},{"name":"About","link":"/about","type":"title"},{"name":"Help Center","link":"https://kqed-helpcenter.kqed.org/s","type":"title"}]}]},"pagesReducer":{},"postsReducer":{"stream_live":{"type":"live","id":"stream_live","audioUrl":"https://streams.kqed.org/kqedradio","title":"Live Stream","excerpt":"Live Stream information currently unavailable.","link":"/radio","featImg":"","label":{"name":"KQED Live","link":"/"}},"stream_kqedNewscast":{"type":"posts","id":"stream_kqedNewscast","audioUrl":"https://www.kqed.org/.stream/anon/radio/RDnews/newscast.mp3?_=1","title":"KQED Newscast","featImg":"","label":{"name":"88.5 FM","link":"/"}},"futureofyou_244604":{"type":"posts","id":"futureofyou_244604","meta":{"index":"posts_1591205157","site":"futureofyou","id":"244604","score":null,"sort":[1474295459000]},"guestAuthors":[],"slug":"lipedema-the-fat-disorder-that-millions-have-but-no-one-has-heard-of","title":"Lipedema: The Fat Disorder That Millions Have But No One Has Heard Of","publishDate":1474295459,"format":"audio","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>In college Judy Maggiore remembers looking in the mirror, perplexed by her body’s disproportion.\u003c/p>\n\u003cp>\"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.\"\u003c/p>\n\u003cp>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.\u003c/p>\n\u003cp>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.\"\u003c/p>\n\u003cfigure id=\"attachment_244616\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-244616 size-medium\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/IMG_0761-800x600.jpg\" alt=\"Judy Maggiore eats a salad everyday for lunch. \" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-1920x1440.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-960x720.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Judy Maggiore eats a salad every day for lunch. \u003ccite>(Lesley McClurg/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Yet she tried every diet imaginable, from Atkins to Weight Watchers to Jenny Craig. Nothing worked.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Finally, last year -- when she was 68 years old -- a lymphatic specialist shocked her with a diagnosis of lipedema.\u003c/p>\n\u003cp>\"I was like, 'Whoa!'\" exclaims Maggiore. \"I’ve never heard that before. They have a name for it and it’s not my fault!\"\u003c/p>\n\u003cp>\u003cstrong>Tricky Diagnosis\u003c/strong>\u003c/p>\n\u003cp>Lipedema is a lymphatic disease that is thought to affect 10 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.\u003c/p>\n\u003cp>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 increasing.\u003c/p>\n\u003cp>\"It’s like being wrapped in bubble wrap,\" says Maggiore.\u003cb>\u003cbr>\n\u003c/b>\u003c/p>\n\u003cp>The causes are mysterious too, although early \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/20358611\" target=\"_blank\">studies\u003c/a> suggest lipedema is a genetic condition in women. It seems the disease is hormonally triggered, as the onset is usually around puberty, and symptoms worsen during childbirth and menopause.\u003c/p>\n\u003cp>\"We just have the earliest clues about where to look and what to think about,\" says \u003ca href=\"https://med.stanford.edu/profiles/stanley-rockson\" target=\"_blank\">Dr. Stanley Rockson\u003c/a>, a professor and researcher at Stanford University.\u003c/p>\n\u003cp>Usually fat cells increase when you overeat, and then decrease when you diet -- but something goes awry in lipedema patients. Rockson uses the metaphor of a bank to illustrate how cells in lipedema patients work.\u003c/p>\n\u003cp>\"They’re a very unusual bank, because they accept deposits but no withdrawals,\" says Rockson. \"So once they accumulate material, it never comes out again.\"\u003c/p>\n\u003cp>Rockson is one of only a handful of lipedema specialists in the world trying to understand the disease's pathology. In a current study, he’s analyzing tissue samples from the legs and abdomen to better understand why subcutaneous fat accumulates primarily in the lower body. He’s also testing anti-inflammatory drugs that have worked on other lymphatic diseases to reduce pain. And he's one of the founders of an \u003ca href=\"http://lymphaticnetwork.org/\" target=\"_blank\">international registry\u003c/a> collecting the medical records of patients who suffer from lymphatic diseases. He hopes the research will eventually lead to treatments for the disease. As of now, doctors have few options for patients.\u003c/p>\n\u003cp>\u003cstrong>Liposuction Offers Some Hope\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>The only long-term treatment is liposuction, and Judy Maggiore is terrified of surgery. But some women don’t have a choice.\u003c/p>\n\u003cp>\u003ciframe width=\"640\" height=\"360\" src=\"https://www.youtube.com/embed/WPwhWfFhlYc?feature=oembed\" frameborder=\"0\" allow=\"autoplay; encrypted-media\" allowfullscreen>\u003c/iframe>\u003cbr>\n\u003csmall>\u003cem>VIDEO: Marlene Simpson's liposuction surgery to treat lipedema, conducted by Dr. David Amron.\u003c/em>\u003c/small>\u003c/p>\n\u003cp>When Marlene Simpson’s scale topped three hundred pounds, she was desperate for thinner legs. She wasn't sleeping, which lead to exhaustion and made functioning at work nearly impossible.\u003c/p>\n\u003cp>But her initial appointment with a plastic surgeon was devastating. The physician denied her self-diagnosis. \"He told me that I shouldn’t believe what I see on the Internet,\" says Simpson.\u003c/p>\n\u003cp>But she didn't give up. More Internet research led her to \u003ca href=\"http://www.amronmd.com/about/meet-dr-amron/\" target=\"_blank\">Dr. David Amron\u003c/a>, a Beverly Hills surgeon. She booked a flight as soon as possible. After two surgeries, Simpson’s legs were 24 pounds lighter.\u003c/p>\n\u003cfigure id=\"attachment_244610\" class=\"wp-caption aligncenter\" style=\"max-width: 634px\">\u003cimg class=\"size-medium wp-image-244610\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/Marlene-Simpson-Legs-634x600.jpg\" alt=\"Marlene Simpson's legs before and after liposuction surgery to treat her lipedema. \" width=\"634\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs-634x600.jpg 634w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs-400x378.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs-768x726.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs.jpg 774w\" sizes=\"(max-width: 634px) 100vw, 634px\">\u003cfigcaption class=\"wp-caption-text\">Marlene Simpson's legs before and after liposuction surgery to treat her lipedema.\u003c/figcaption>\u003c/figure>\n\u003cp>When she returned home to Sacramento, she felt like a new person.\u003c/p>\n\u003cp>\"It wasn’t ‘til I had surgery that I just realized that I was in a lot of pain,\" says Simpson.\u003c/p>\n\u003cp>Simpson's pain is caused by all the extra weight pressing on her nerves and lymph vessels. Over time, lipedema can be debilitating because blood clots, skin ulcers and recurrent infections can develop.\u003c/p>\n\u003cp>\u003cstrong>A Medical Unknown\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>But the relief put Simpson back $21,000 because her insurance denied the procedure. The company claims that liposuction is a cosmetic procedure, and it is not a recognized treatment for lipedema.\u003c/p>\n\u003cp>But Amron says liposuction \u003ci>does\u003c/i> work. If patients continue to diet and exercise, he swears the fat should not come back.\u003c/p>\n\u003cfigure id=\"attachment_244641\" class=\"wp-caption aligncenter\" style=\"max-width: 600px\">\u003cimg class=\"size-medium wp-image-244641\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/Marlenes-fat-600x600.jpg\" alt=\"The fat that was removed from Marlene Simpson's legs during liposuction surgery. \" width=\"600\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-600x600.jpg 600w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-400x400.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-768x768.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-1180x1180.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-1920x1920.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-960x960.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-32x32.jpg 32w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-50x50.jpg 50w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-64x64.jpg 64w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-96x96.jpg 96w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-128x128.jpg 128w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-150x150.jpg 150w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat.jpg 2048w\" sizes=\"(max-width: 600px) 100vw, 600px\">\u003cfigcaption class=\"wp-caption-text\">The fat removed from Marlene Simpson's legs during liposuction surgery.\u003c/figcaption>\u003c/figure>\n\u003cp>Ninety percent of Dr. Amron’s clientele have lipedema. They come to him for liposuction.\u003c/p>\n\u003cp>\"They found their way to me about ten years ago when I started doing lipedema patients, and I’d never even heard of the condition,\" says Amron\u003cstrong>.\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>Ignored by the Medical Community\u003c/strong>\u003c/p>\n\u003cp>In fact, most doctors haven’t heard of lipedema. A 2004 Stanford University \u003ca href=\"http://www.journaloflymphoedema.com/media/journals/_/1108/files/jol6-1-44-9.pdf\" target=\"_blank\">study\u003c/a> showed that most U.S. medical schools spend less than 30 minutes teaching the entire lymphatic system.\u003c/p>\n\u003cp>\"So, not surprisingly, doctors don’t know a lot about these diseases or the underlying conditions,\" says Rockson. \"If you poll 100 physicians off the street, you might find one that knows the term lipedema, and that one might not have much to say about it other than a recognition of the name.\"\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>One of his patients, Judy Maggiore, hopes to someday benefit from his research. In the meantime, her daily lunch is a bowl filled with vegetables, and even though she usually skips dinner, the flab on her legs continues to thicken, causing chronic pain. She savors each bite slowly, in hopes of keeping fat cells at bay.\u003c/p>\n\n","blocks":[],"excerpt":"Millions of women are suffering from a disease that poses as obesity. Most patients don’t know they have it, and doctors haven’t heard of it. Plus, dieting doesn’t work because the patients have abnormal fat cells that never go away. ","status":"publish","parent":0,"modified":1482442886,"stats":{"hasAudio":false,"hasVideo":true,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":36,"wordCount":1087},"headData":{"title":"Lipedema: The Fat Disorder That Millions Have But No One Has Heard Of | KQED","description":"Millions of women are suffering from a disease that poses as obesity. Most patients don’t know they have it, and doctors haven’t heard of it. Plus, dieting doesn’t work because the patients have abnormal fat cells that never go away. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Lipedema: The Fat Disorder That Millions Have But No One Has Heard Of","datePublished":"2016-09-19T14:30:59.000Z","dateModified":"2016-12-22T21:41:26.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"244604 http://ww2.kqed.org/futureofyou/?p=244604","disqusUrl":"https://ww2.kqed.org/futureofyou/2016/09/19/lipedema-the-fat-disorder-that-millions-have-but-no-one-has-heard-of/","disqusTitle":"Lipedema: The Fat Disorder That Millions Have But No One Has Heard Of","source":"Future of You","audioUrl":"http://www.kqed.org/.stream/anon/radio/science/2016/09/LipedemaMcClurg160919.mp3","path":"/futureofyou/244604/lipedema-the-fat-disorder-that-millions-have-but-no-one-has-heard-of","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>In college Judy Maggiore remembers looking in the mirror, perplexed by her body’s disproportion.\u003c/p>\n\u003cp>\"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.\"\u003c/p>\n\u003cp>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.\u003c/p>\n\u003cp>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.\"\u003c/p>\n\u003cfigure id=\"attachment_244616\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-244616 size-medium\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/IMG_0761-800x600.jpg\" alt=\"Judy Maggiore eats a salad everyday for lunch. \" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-1920x1440.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-960x720.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Judy Maggiore eats a salad every day for lunch. \u003ccite>(Lesley McClurg/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Yet she tried every diet imaginable, from Atkins to Weight Watchers to Jenny Craig. Nothing worked.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Finally, last year -- when she was 68 years old -- a lymphatic specialist shocked her with a diagnosis of lipedema.\u003c/p>\n\u003cp>\"I was like, 'Whoa!'\" exclaims Maggiore. \"I’ve never heard that before. They have a name for it and it’s not my fault!\"\u003c/p>\n\u003cp>\u003cstrong>Tricky Diagnosis\u003c/strong>\u003c/p>\n\u003cp>Lipedema is a lymphatic disease that is thought to affect 10 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.\u003c/p>\n\u003cp>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 increasing.\u003c/p>\n\u003cp>\"It’s like being wrapped in bubble wrap,\" says Maggiore.\u003cb>\u003cbr>\n\u003c/b>\u003c/p>\n\u003cp>The causes are mysterious too, although early \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/20358611\" target=\"_blank\">studies\u003c/a> suggest lipedema is a genetic condition in women. It seems the disease is hormonally triggered, as the onset is usually around puberty, and symptoms worsen during childbirth and menopause.\u003c/p>\n\u003cp>\"We just have the earliest clues about where to look and what to think about,\" says \u003ca href=\"https://med.stanford.edu/profiles/stanley-rockson\" target=\"_blank\">Dr. Stanley Rockson\u003c/a>, a professor and researcher at Stanford University.\u003c/p>\n\u003cp>Usually fat cells increase when you overeat, and then decrease when you diet -- but something goes awry in lipedema patients. Rockson uses the metaphor of a bank to illustrate how cells in lipedema patients work.\u003c/p>\n\u003cp>\"They’re a very unusual bank, because they accept deposits but no withdrawals,\" says Rockson. \"So once they accumulate material, it never comes out again.\"\u003c/p>\n\u003cp>Rockson is one of only a handful of lipedema specialists in the world trying to understand the disease's pathology. In a current study, he’s analyzing tissue samples from the legs and abdomen to better understand why subcutaneous fat accumulates primarily in the lower body. He’s also testing anti-inflammatory drugs that have worked on other lymphatic diseases to reduce pain. And he's one of the founders of an \u003ca href=\"http://lymphaticnetwork.org/\" target=\"_blank\">international registry\u003c/a> collecting the medical records of patients who suffer from lymphatic diseases. He hopes the research will eventually lead to treatments for the disease. As of now, doctors have few options for patients.\u003c/p>\n\u003cp>\u003cstrong>Liposuction Offers Some Hope\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>The only long-term treatment is liposuction, and Judy Maggiore is terrified of surgery. But some women don’t have a choice.\u003c/p>\n\u003cp>\u003ciframe width=\"640\" height=\"360\" src=\"https://www.youtube.com/embed/WPwhWfFhlYc?feature=oembed\" frameborder=\"0\" allow=\"autoplay; encrypted-media\" allowfullscreen>\u003c/iframe>\u003cbr>\n\u003csmall>\u003cem>VIDEO: Marlene Simpson's liposuction surgery to treat lipedema, conducted by Dr. David Amron.\u003c/em>\u003c/small>\u003c/p>\n\u003cp>When Marlene Simpson’s scale topped three hundred pounds, she was desperate for thinner legs. She wasn't sleeping, which lead to exhaustion and made functioning at work nearly impossible.\u003c/p>\n\u003cp>But her initial appointment with a plastic surgeon was devastating. The physician denied her self-diagnosis. \"He told me that I shouldn’t believe what I see on the Internet,\" says Simpson.\u003c/p>\n\u003cp>But she didn't give up. More Internet research led her to \u003ca href=\"http://www.amronmd.com/about/meet-dr-amron/\" target=\"_blank\">Dr. David Amron\u003c/a>, a Beverly Hills surgeon. She booked a flight as soon as possible. After two surgeries, Simpson’s legs were 24 pounds lighter.\u003c/p>\n\u003cfigure id=\"attachment_244610\" class=\"wp-caption aligncenter\" style=\"max-width: 634px\">\u003cimg class=\"size-medium wp-image-244610\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/Marlene-Simpson-Legs-634x600.jpg\" alt=\"Marlene Simpson's legs before and after liposuction surgery to treat her lipedema. \" width=\"634\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs-634x600.jpg 634w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs-400x378.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs-768x726.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs.jpg 774w\" sizes=\"(max-width: 634px) 100vw, 634px\">\u003cfigcaption class=\"wp-caption-text\">Marlene Simpson's legs before and after liposuction surgery to treat her lipedema.\u003c/figcaption>\u003c/figure>\n\u003cp>When she returned home to Sacramento, she felt like a new person.\u003c/p>\n\u003cp>\"It wasn’t ‘til I had surgery that I just realized that I was in a lot of pain,\" says Simpson.\u003c/p>\n\u003cp>Simpson's pain is caused by all the extra weight pressing on her nerves and lymph vessels. Over time, lipedema can be debilitating because blood clots, skin ulcers and recurrent infections can develop.\u003c/p>\n\u003cp>\u003cstrong>A Medical Unknown\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>But the relief put Simpson back $21,000 because her insurance denied the procedure. The company claims that liposuction is a cosmetic procedure, and it is not a recognized treatment for lipedema.\u003c/p>\n\u003cp>But Amron says liposuction \u003ci>does\u003c/i> work. If patients continue to diet and exercise, he swears the fat should not come back.\u003c/p>\n\u003cfigure id=\"attachment_244641\" class=\"wp-caption aligncenter\" style=\"max-width: 600px\">\u003cimg class=\"size-medium wp-image-244641\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/Marlenes-fat-600x600.jpg\" alt=\"The fat that was removed from Marlene Simpson's legs during liposuction surgery. \" width=\"600\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-600x600.jpg 600w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-400x400.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-768x768.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-1180x1180.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-1920x1920.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-960x960.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-32x32.jpg 32w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-50x50.jpg 50w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-64x64.jpg 64w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-96x96.jpg 96w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-128x128.jpg 128w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-150x150.jpg 150w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat.jpg 2048w\" sizes=\"(max-width: 600px) 100vw, 600px\">\u003cfigcaption class=\"wp-caption-text\">The fat removed from Marlene Simpson's legs during liposuction surgery.\u003c/figcaption>\u003c/figure>\n\u003cp>Ninety percent of Dr. Amron’s clientele have lipedema. They come to him for liposuction.\u003c/p>\n\u003cp>\"They found their way to me about ten years ago when I started doing lipedema patients, and I’d never even heard of the condition,\" says Amron\u003cstrong>.\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>Ignored by the Medical Community\u003c/strong>\u003c/p>\n\u003cp>In fact, most doctors haven’t heard of lipedema. A 2004 Stanford University \u003ca href=\"http://www.journaloflymphoedema.com/media/journals/_/1108/files/jol6-1-44-9.pdf\" target=\"_blank\">study\u003c/a> showed that most U.S. medical schools spend less than 30 minutes teaching the entire lymphatic system.\u003c/p>\n\u003cp>\"So, not surprisingly, doctors don’t know a lot about these diseases or the underlying conditions,\" says Rockson. \"If you poll 100 physicians off the street, you might find one that knows the term lipedema, and that one might not have much to say about it other than a recognition of the name.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>One of his patients, Judy Maggiore, hopes to someday benefit from his research. In the meantime, her daily lunch is a bowl filled with vegetables, and even though she usually skips dinner, the flab on her legs continues to thicken, causing chronic pain. She savors each bite slowly, in hopes of keeping fat cells at bay.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/244604/lipedema-the-fat-disorder-that-millions-have-but-no-one-has-heard-of","authors":["11229"],"categories":["futureofyou_452","futureofyou_1","futureofyou_73"],"tags":["futureofyou_156","futureofyou_1052","futureofyou_562"],"featImg":"futureofyou_244645","label":"source_futureofyou_244604"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. 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Hosted by journalists of color, the show tackles the subject of race head-on, exploring how it impacts every part of society — from politics and pop culture to history, sports and more.\u003cbr />\u003cbr />\u003cem>Life Kit\u003c/em>, which will be in the second part of the hour, guides you through spaces and feelings no one prepares you for — from finances to mental health, from workplace microaggressions to imposter syndrome, from relationships to parenting. The show features experts with real world experience and shares their knowledge. Because everyone needs a little help being human.\u003cbr />\u003cbr />\u003ca href=\"https://www.npr.org/podcasts/510312/codeswitch\">\u003cem>Code Switch\u003c/em> offical site and podcast\u003c/a>\u003cbr />\u003ca href=\"https://www.npr.org/lifekit\">\u003cem>Life Kit\u003c/em> offical site and podcast\u003c/a>\u003cbr />","airtime":"SUN 9pm-10pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Code-Switch-Life-Kit-Podcast-Tile-360x360-1.jpg","meta":{"site":"radio","source":"npr"},"link":"/radio/program/code-switch-life-kit","subscribe":{"apple":"https://podcasts.apple.com/podcast/1112190608?mt=2&at=11l79Y&ct=nprdirectory","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93d3cubnByLm9yZy9yc3MvcG9kY2FzdC5waHA_aWQ9NTEwMzEy","spotify":"https://open.spotify.com/show/3bExJ9JQpkwNhoHvaIIuyV","rss":"https://feeds.npr.org/510312/podcast.xml"}},"commonwealth-club":{"id":"commonwealth-club","title":"Commonwealth Club of California Podcast","info":"The Commonwealth Club of California is the nation's oldest and largest public affairs forum. 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