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‘Fat disease’ puzzles female sufferers

By March 3, 2016 December 23rd, 2021 12 Comments

Lipedema symptoms include bruising, swelling, sense of heaviness, tenderness

By Eryka Washington – Investigative Reporter

For years, Nicole Zepeda battled her weight.

[WEB EXTRAS: Free online viewing for lipedema | Zepeda and Seo’s extended interviews]

“As I was growing up, I was always overweight,” she said.

But by puberty, Zepeda’s weight got even worse.

“It just started coming on, and I couldn’t stop it. My legs kept getting larger,” she said.

But Zepeda managed a modeling career.

“I would look at other plus-size models and I would think, ‘OK, we are the same size. Why are their legs normal? Why do they have small ankles, and why don’t they have these skin folds?'” Zepeda said.

At 29, Zepeda finally got answers. She was diagnosed with lipedema. Local 6 News spoke to her doctor via Skype.

Dr. Mark Smith said, “Most patients don’t even know they have lipedema. I have seen women break down in tears once they receive their diagnosis, because their whole lives they’ve been told they’re fat and they’re not exercising; not eating right. Meanwhile, they have a condition that’s not as simple as diet and exercise.”

So what is lipedema? It’s the excess deposit and expansion of fat cells and fluid in an unusual pattern found in the extremities. It can be very painful and debilitating.

Here’s what it looks like: It shows up disproportionately, in large columns like legs, usually from the waist to just above the ankles.

Other symptoms include:

  • Bruising
  • Swelling
  • Sense of heaviness and tenderness

Lipedema fat cannot be exercised or even starved away.

“I kept thinking, ‘What am I doing wrong? Why isn’t it working?'” Catherine Seo said.

Seo was diagnosed with lipedema in 2012.

“The thing that was most remarkable for me: I went home that day and I just heard this in my head over and over and over again, and I just kept saying, ‘You mean it’s not my fault?'” Seo said.

Smith said the biggest problem with the disease is knowledge.

“Although it’s been around for 75 years, most physicians, if you poll them, will have never heard of it,” Smith said. “I think that’s a big problem right off the bat.”

Seo has made it her mission to spread the word, traveling the world, even filming a documentary on lipedema.

“We are not alone anymore,” Seo said. “That’s the thing that (is) so amazing.”

Lipedema is inherited, and puberty, pregnancy and perimenopause exacerbate the process. Treatment is compression therapy and liposuction.

“The main thing I want people to remember is it’s not your fault,” Zepeda said. “We finally know what we have, and once you know what you have, then you can learn to live with it.”

Both Seo and Zepeda have had surgeries, but insurance does not cover this procedure — at least not yet.

Approximately 11 million women in the U.S. have this disease, but the majority of those women are unaware they have it. Local 6 has placed more of Seo and Zepeda’s interview, as well as a link to more information about lipedema, on the Local 6 Facebook page.

Join the discussion 12 Comments

  • kim feltner says:

    I HAVE IT AND IT’S TAKEN YEARS TO FIND OUT A LITTLE INFORMATION ON IT.

  • Marilyn Sloan says:

    Thank you. I too have lipadema an it has changed my life. I don’t go out much. I always cried because i exercised to loose weight an still Dr say you not doing it. I was hard in myself to say yes i am. Walking exercising on a bime calorie intake still nothing made a differance. Thank yiu i now know i wasn’t crazy.

  • Claudia Ansah says:

    Thank you so much for sharing I am suffering from it right now

  • Ik heb het zelf ook mijn huisdokter moeten vertellen ,wat ik ook belangrijk vind is zijn de lotgenoten dagen . Het is frustrerend, lijn ook al mijn hele leven ,ben nu 74 jaar .
    Het is jammer dat er verder nog niet veel gebeurd aan onderzoek en dergelijke, het gebeurd wel in Amerika. Sterkte iedereen

  • Janet Smith says:

    I have lymphedema so bad mine is leaking fluids out of my legs now. I’m 56 years old and I have other leg problems and it has ruined my life.

  • Elishia says:

    Hello,
    Do you know how to get the surgery paid for by any type of insurance and not deemed cosmetic?

  • Wandy Munoz says:

    I have my two sisters and my daughter with Lipedema. It was hard for them not knowing what they had because exercise didn’t help them reduce. Their face and maybe their waste but the rest of their body got fatter. My daughter and one of my sisters went to Germany and both got liposuction on both thighs. Then my daughter got pregnant and this triggered and she got fatter and her grew . So now she wants to have a stomach baristric surgery , and I am willing for her to do it because I want her to be happy.

  • Jeannette McAteer says:

    Many thanks everyone ,as a sufferer of this condition,I deeply appreciate your information/content..Could you advise me on the best compression garments ? I would be most grateful….
    I am a Yoga Teacher (47years) Have loved every moment…Now I am limited to one class..My flexibility ,or the lack off…Is disturbing to say the least…My fatigue is overwhelming.i cannot participate in leg raising asanas etc…
    My legs feel like Tree trunks soaked in water…I demonstrate what I can and talk my students through the rest…(I have experienced Yoga students who can demonstrate for me….I also have Lymphoedema and Fibromyalgia…Any advice would be appreciated..Looking forward to your next article …(..I also use gentle stretching both for myself and my students with the same condition…Yours in anticipation….Jeannette McAteer….

  • Sherlie says:

    Hi,

    I am 67yrs old and found out recently, I have Lipedema. I searched online, asking why can’t I loose weight off my legs. Only one result told me about Lipedema and explained what it was. Needless to say I was astounded and overwhelmed to know after 55yrs I have an answer. Like many I’ve been frustrated by the fact that I wasn’t good enough at dieting and exercise to loose the weight. I’m at my lowest from doing a Keto diet but have come to a complete standstill with regards to getting the last of the weight off. Now I am looking at everything I can find about it.

  • Patricia Wallace says:

    I didn’t realize that what my mother told me would happen would eventually come true.
    My mother’s paternal family on the Dutch side all the disease. . The Hattingh family had all the classic symptoms big legs big arms etc. My mother. Said Patricia don’t put on weight you will not be able to lose it.
    I spoke to my doctor and she agreed with my mother and said it’s genetic, progressive and irreversible.
    I was shocked and just because i was a late developer and started puberty etc later my turn was still coming!
    I married Kate had my one and only child at 35, was very swollen dusting pregnancy and did not lose weight easily after my baby was born.. Eventually after great effort I brought my weight to 54kg,bud sadly after an early hysterectomy at 38. and the subsequent HRT my weight skyrocketed to 100kg at one stage it was hovering around 115 kg but in 2012 I read an article done on an interview with Prof Tim Noakes and I went on a low carb diet. And at 77yrs old, I am still 100 kg and it’s. SCARY.!

  • Karen Stevens says:

    I have it too. But only found out about a few years ago. After constantly dieting exercise every day and never losing anything. I’ve been to my doctor and they don’t want help just tell u to eat less. I now feel very depressed don’t want to go out. 😢. Is there a diet out that dose help. ❤️

  • Shalonda Fennell says:

    Thank you because I knew also something wasn’t right after all the exercise and diet I was doing and still the thighs had that ugly look I couldn’t get rid of and it took a plastic surgeon assistant to tell me what I was telling everybody else. But they just thought I was making excuses to why I wanted to give up on my exercises. But thanks for now knowing I am not the only one dealing with these issues. I have never been able to wear shorts or mini skirts no matter how small I have gotten and I want to show my weight loss results every chance I can get. So now I got to wait for finances to afford the surgical procedure. So I can look normal in the leg areas

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