Introduction to Catherine Seo
Dr. Eric Westman: It’s my pleasure to introduce Catherine Seo.
Catherine Seo: So wonderful to be here with you, Dr. Westman.
Background and history
Dr. Eric Westman: Many people don’t know who you are and what you do, so how would you introduce yourself? Where are you from, and why are you in this space?
Catherine Seo: I came to keto from the back door, like other people. I work with a community dealing with a somewhat little-known fat and lymphatic disorder called lipedema. Lipedema, though primarily considered a fat disorder because it includes adiposity (or fat tissue) and metabolism, also involves the lymphatic system. This adds to swelling, pain, bruising, and a very particular pathology.
I found out that I had it, or I had something, and nobody knew what I had. After quite a bit of research and really delving into some of the literature, I found lipedema, and it found me. What happened, slowly at first, but then maybe not so slowly, is that I developed a community because we needed help, and we helped one another. That’s the beauty of the internet. The beauty of our technology is it can bring some of us together where we can say, “You too? Me too?! How can we know this?” Which is what happened.
Symptoms of lipedema and how it is diagnosed.
Dr. Eric Westman: How is it (lipedema) initially diagnosed? I think this is pretty common today, that people have to do a little research on their own. Doctors aren’t really in tune with lipedema.
Catherine Seo: No, not at all. I’m happy to say that we’ve put out a lot of material, ebooks, webinars, and a lot of outreach because we want to reach women. There are as many as 17 million women in the U.S. who have it, and what happens is it’s misdiagnosed as obesity or some form of an eating disorder. I’m not saying it doesn’t include that because it can, but it’s not the primary driver. The primary driver is the disease process itself that affects, as I said, the lymphatic system, the adipose system, the vascular system, and the whole lot.
As I’ve worked with it, one of the things that’s part of the symptoms of this particular disorder is disproportionate fat distribution. The upper body can be fairly normal, while the lower body and the arms can be very exaggerated.
Lipedema is symmetrical
Dr. Eric Westman: If you look in the mirror and see a difference in your size based on fat distribution, that’s one sign that you might have lipedema.
Catherine Seo: Lipedema is symmetrical, whereas lymphedema tends to be asymmetrical (though not always), and lymphedema is much more about swelling or the holding of lymphatic fluid in the interstitium, which is the space between the muscle and the skin.
Through all of that, diet and exercise doesn’t work. What do I mean when I say that? I mean that people can diet and do low-calorie restrictions. Women will say, “I’ve done everything right, and nothing works.” Even after bariatric surgery, women have come into the community who have had RNY (Roux-en-Y) or full gastric bypass. They lose some weight, but it doesn’t change their shape, and it doesn’t respond well to anything except keto.
Texture of lipedema fat
Dr. Eric Westman: There’s a new paper, an old concept in a new paper, and Bartos is one of the authors. They describe it as a “fat-trapping disease.” Fat trapping means fat goes in, but you can’t get it out. Like the one-way valve.
When you don’t have lipedema, basically it’s insulin, the carbs raise the insulin, and insulin keeps the fat locked in. There has to be something at a biological level that makes it harder to draw fat out.
Describe how someone would feel their thigh, for example. I’ve felt some people where they have a nodularity to the fat. Is that pretty common? How can you tell by just the texture?
Catherine Seo: If you feel your arms or your thigh, fat is usually mushy. Regular white fat is mushy and soft. Not so with lipedema. Lipedema fat is nodular, like feeling beans in a bag. Like kidney beans, you can feel their boundaries because of the fibrotic tissue. Part of the issue is fibrotic tissue, which is scar tissue that heals over and creates boundaries, and that’s what happens in lipedema. Why this happens, they don’t know.
I think, having dealt with obesity, as I know you have for so many years, there’s so much bias and stigma attached to weight. Those who have lived with it know it well, and those who’ve treated it see it. I know it’s part of our culture and our way of defining the world, and for whatever reason, fat is one of the last forms of discrimination that has collusion. It’s still considered okay to think poorly of someone who carries extra fat because, obviously, it’s something they’re doing. The assumption is they’re up in the middle of the night eating boxes of cookies and ice cream.
At what age does lipedema start?
Dr. Eric Westman: I have to explain that you’re using New York sarcasm, big-city sarcasm, because, I’ve learned that in a doctor’s office, sarcasm doesn’t go well. Just kidding! The stories I hear from people about how other doctors behave, and the bias they have against people affected by obesity, it’s not right. Back to the point, if one of my patients or one of our members, those who are watching, trying to figure out if they have lipedema, this can start when you’re young.
Catherine Seo: It mostly starts at puberty. We know some things about it as a disease entity. It gets initiated or exacerbated with hormonal dysfunction. It’s mostly women, very, very few men. There are some men, though, who have hormonal dysregulation. Men who are maybe estrogen dominant and lacking in testosterone. It’s rare, but it still happens. For women, it’s the disruption of estrogen and the hormones themselves. At puberty, you might start to notice that your legs are disproportionate. Legs get bigger and column-like.
Progression of lipedema
Dr. Eric Westman: People have even told me that it just feels heavier. Is it a slow progression, or can it come quickly, like in a year, or take years?
Catherine Seo: It is fascinating because it’s almost like everyone has a different story. It has different progressions in terms of timing and triggers. There are some of us, me being one of them, where food was an issue. I have an eating disorder. When I was young, I was a binge eater. I grew out of it; I worked hard to grow out of it. I’ve been in Overeaters Anonymous for over 35 years, so that’s part of it, but it’s not the core of it.
It’s not your fault
Catherine Seo: I want your members to know that the one thing so clear is that it’s not your fault. That’s the hardest thing. When I first realized I was dealing with a disease entity, I was like, “You mean it’s not my fault?” I thought it was my fault. I was certain it was my fault. I blamed myself my entire life.
Dr. Eric Westman: And everyone probably told you it was your fault too.
Catherine Seo: Yes. To go back to the New York sarcasm, the literature talks about “controllability.” That’s the research phrase they use. There is this misnomer that weight is controllable. We know that it isn’t. We’ve proved it again and again. Obesity medicine has been very clear that there are genetic factors, metabolic factors, and so many different contributors to it. I’ve been in this field for a very long time, I’ve lived it my entire life, and I still don’t really believe it. I still think I’m doing something wrong. It’s so inculcated in us.
I’m laughing because it’s much easier than it ever used to be. As I said, nothing worked. Then we found keto. I met Leslyn Keith, whom I know you know because you worked together many years ago and still stay in touch. She’s wonderful. She was researching a ketogenic way of eating for lymphedema, and we met at the National Institutes of Health (NIH) in 2015. They had the first-ever conference on the lymphatic system.
The lymphatic system
Catherine Seo: The lymphatic system is one of the most important systems in our body because it is the immune system, and it deals with the regulation and balance of fluid in the body. They don’t teach it in medical school. No doctors know about it. The doctors that do know about it, bless them. My primary care doctor said to me, “In my entire practice, I have had two women who have lymphedema because they had breast cancer. That’s it.” There’s such a limitation to it, yet it’s one of the most important systems in the body.
Dr. Eric Westman: It’s one of those things like “You don’t know what you’ve got till it’s gone.” It does all this work behind the scenes, but no one sticks up for the lymphatics in the medical world.
There are immunologists and infectious disease doctors. They look at it as the place where white blood cells travel, and if you have lymph node enlargement from a sore throat, that’s the lymphatic system. An ENT doctor might see it if you have swollen glands, but that’s the lymph system. The GI tract uses the lymph system when it absorbs food. There’s no surgical specialty or a medical subset specifically for the lymphatic system. It really crosses so many boundaries.
As you’re saying, a doctor in practice won’t see it very often, so it doesn’t rise up as an issue repeatedly. It’s great that the NIH finally came up with topics and maybe some funding to study it.
How did you, from your own experience, extrapolate or want to do more to bring other people in? How did that happen?
Going to the U.K.
Catherine Seo: It was such a journey.
Dr. Eric Westman: People need to hear how things progress. People are changing and wanting to replicate things all the time.
Catherine Seo: I thought I was the only one on the planet that had this particular array of disorders. Then, I started to hear about others, and someone invited me to the UK. There was a group of 50 women gathering in Birmingham, and someone invited me. I can remember walking at the time, I was walking with a friend a lot, when I said, “I can’t go to England for the weekend, that’s insane!” She said to me, “You have to go. It’s the only place you can find what you’re looking for.”
So, I went to England for the weekend, and I met a group of women there. It was like walking into a room where everyone understood and had similar symptoms and experiences. One thing led to another. At the time, I had a background in media, and my advanced degree was in media psychology, so I thought, “If I’m going for the weekend, I’m going to make it worthwhile. I think I’ll bring my camera and make a documentary film.”
That’s what I did. I started to interview everyone because, basically, what is research? Research is asking, listening, and then looking at all the data to see what’s common, what we can extrapolate, and what we can learn from the experiences of a number of people. My favorite is the ACE study because they had, it was run through the CDC, 17,000 people that they used in their base study. We had 50, but you can learn from everyone.
One thing led to another, and it felt like we grew together as a community. That’s how I feel about the keto community, too, and my involvement in keto. When you look at keto and the food pyramid. I remember when I went lower carb, not low-carb, but lower carb, wondering if my hair was going to fall out and my fingernails were going to drop off because carbohydrates were so important. At the time, in the ’80s, nobody was questioning anything back then. I’m Italian, give me a loaf of Italian bread and pasta, and I’m happy!
I’m going to circle back because I met Leslyn at NIH and we started to communicate. When I saw her research, I thought, “Oh my goodness.” So, we started to communicate and work together. The thing about carbohydrates is they are inflammatory. It’s a pity, but they are very inflammatory. If you have lipedema, there’s a difference. You can feel the pain scale increase within hours of eating carbs.
Leslyn and I started to work together. We said to the community we had at the time, this is going back to probably 2016, “We think this is something interesting. Do you want to come and try it out? We don’t know, but we’re going to give it a try.” The results were remarkable because nothing had worked for many of the women. Many of the women started to experience a decrease in pain, a diminishment in swelling, and a reduction in volume.
It doesn’t work forever for everyone. A number of us, including me, tried carnivore. Some have lasted very long on carnivore. I lasted long enough on carnivore to see some differences. I find vegetables delightful, so it’s hard for me to be without them, but carnivore has worked for many.
What we say over and over again is, we’re each unique. We have different compositions and different ways that our bodies respond to things. Stop, listen, ask, and listen to your body. Your body is always communicating with you.
Does fat hurt?
Dr. Eric Westman: We know that joints hurt after eating sugar, I hear that all the time. With your experience, it’s actually the fat that hurts.
Then there’s Dercum’s disease. I think that’s the name for painful fat. If someone touches you and it hurts, that’s not normal, that’s another sign. I’ve met Dr. Herbst through the years. She studies lipedema and lymphedema.
Catherine Seo: She’s also an expert in Dercum’s disease. Dercum’s is horrifically painful. Sometimes, I think of it like mycelium. Under the mycelium are these massive networks where fungus and mushrooms grow out of. The Earth is filled with it. The body somehow grows fatty tumors, and those fatty tumors are Dercum’s disease.
It’s incredibly painful. I know of several cases where they were surgically removed. One person had 35 tumors removed, and they all grew back, plus more. It’s a mystery.
The Földi Clinic
Dr. Eric Westman: Does Guenter Klose still have a training program?
Catherine Seo: Yes, you spoke at his conference in Colorado
Dr. Eric Westman: He introduced me to the Földi Clinic, which, as best I can tell, still exists in the Black Forest of Germany. It’s expensive to go there and get treated. I don’t know many of the details, but do some people require that level of treatment? I think they combine weight loss surgery, plastic surgery, and other surgeries. It sounded pretty intense, as people stayed there for a while.
Catherine Seo: Yes. It’s like a hospital clinic where people are there specifically for lymphedema or lymphatic disorders, and they’ve done research. I was there for six months at one point, doing research, and I learned so much.
Dr. Eric Westman: If someone had all the time and money in the world, could they still contact the Földi Clinic?
Catherine Seo: Yes. Hinterzarten is in the Black Forest. It’s this tiny, unbelievable town. It’s beautiful.
Surgery specific to lipedema
Dr. Eric Westman: From time to time, I get approached by doctors, surgical doctors at Duke. There are some new surgical techniques that they claim to be able to do. What’s your take on, the big-picture view of using the scalpel to fix this?
Catherine Seo: There is surgery that is specific to lipedema, and it’s less scalpel and more cannula because it’s liposuction.
Dr. Eric Westman: Cannula means a tube, sucking.
Catherine Seo: It’s a very long, skinny tube with an opening at the tip that sucks the fat out. There’s something called water jet liposuction, and it’s like a jet of water or fluid that comes out and takes the fluid back with the fat tissue. That’s much more common, and they’ve had some wonderful breakthroughs. Most of those have come, I must say, out of Europe, mostly Germany.
The Földi Clinic is in Germany, and doctors Michael and Etelka Földi were a couple, and they really moved the needle on the lymphatic system. That was their work. There are a couple of others. There’s a couple in, I believe, Austria, but it’s that part of the world that, for some reason, is much more knowledgeable about the lymphatic system.
Medicines for lipedema
Dr. Eric Westman: I had a trip to Europe where we had side trips, and I remember going to the medical museum in Vienna. They had the basin of Ignaz Semmelweis, they claim that’s where he washed his hands so he wouldn’t take the infection from the cadaver suite to the delivery ward. Women were dying 30% more often. Washing the hands was the cure. They didn’t know what it was, and germ theory hadn’t been developed yet. At the same museum, there was the most intricate wax model of the lymphatic system that I had never seen anywhere before. Again, in Europe, I think they were able to dwell on this longer.
That leads me to now. Medical care in the U.S. seems to be medication care. People come to me and their doctors don’t talk about food, they talk about drugs. Has the medical medication world come to study lipedema? Are there medicines that work? Do any of the new GLP-1s or GIP/ GLP-1 combos help?
Catherine Seo: Yes, we’ve been having conversations, and some of the women in the community have gone on Zepbound or, semaglutide, or Saxenda. But nobody knows yet
Dr. Eric Westman: No strong data – I call that no strong signal from the community.
That would be a great place for the drug companies, now. Apparently, they have phenomenally wealthy foundations because those drugs have done so well. That would be a great study to look at the weight loss shots in the context of lipedema. I hope that happens soon.
Catherine Seo: Just to have some understanding.
Keto diet being a great tool
Dr. Eric Westman: Then understanding the mechanism. Why is it fibrotic and scarring? Maybe there’s a drug target that could happen there. So, no community signal of “I went on this and it fixed it”?
I’ve seen that in several situations where people with rare diseases, like glycogen storage problems, changed what they ate to become fat burners, and suddenly, everything was fixed. With a keto diet and lipedema, it’s helpful, it’s a great tool. I don’t know that it miraculously fixes it, though, but it is helpful, right?
Catherine Seo: It is. I like that you called it a tool. I believe it’s a tool, but you need a toolkit because different things work at different times and I think at different stages. One of the biggest issues, at least that I’ve discovered in myself, and with many other women I’ve worked with, is postmenopause. It’s a bit of a disaster.
Hormonal changes and postmenopausal phase
Dr. Eric Westman: You mean, a period of hormonal change?
Catherine Seo: Yes, and while perimenopause, which can go on for years, can be very challenging, the actual postmenopausal phase, for whatever reason, the volume can increase no matter what you’re doing. Even keto doesn’t work at that point, not for everyone. That’s the thing, we’re so different. Sometimes it works for some. Same thing with the GLP-1s. It’s worked for some people in the community because we get reports like, “I just saw a friend of mine who lives on the West Coast. She was posting on Facebook, I think, and she’s been on Zepbound for four or five months, and she’s lost over 35 pounds. She looks fabulous, and she’s happy.”
If it worked I would do it, but it doesn’t work very well for me.
Heredity
Dr. Eric Westman: In the trenches that I’m in at Duke in a weight loss clinic, some of these shots are so strong that people don’t want to eat at all. I see some people come in kind of starving, and we don’t think that’s the healthiest way to do it. There should be some protein every day. I think the shots are helping a lot of people, but if it’s not working, remember the diet still can work.
I also wanted to address the idea that lipedema can run in families. They suddenly get the word, and they think, “Oh yes, my aunt or someone in the ancestry had legs that looked just like that.” How common is it to run in families?
Catherine Seo: It’s very common. Heredity is one of its foundational causes. What’s very interesting is that it is mostly women, so it could be your mother, your aunt, or your grandmother. I have a photo of three generations, and you can see their legs side by side. Men can be carriers, so while it may not show up in a man, his mother might have it, and he carries it to his daughter genetically. They’ve done some work on the genetics of it. There’s a group in the UK that’s working on identifying it, and Dr. Stan Rockson has been doing some work as well, looking at the genetics and being able to identify what might be some kind of commonality. It’s fascinating.
Cutting carbs and simple sugars
Dr. Eric Westman: As a preventive, let’s say you’re a parent and you start seeing the leg growth, or during puberty, the asymmetric distribution of fat. Has anyone addressed what to do then? My toggle default, of course, would be to cut the carbs, and cut the simple sugars, but is anyone addressing that?
Catherine Seo: Just what you said. There are several women in the community whose daughters are reaching puberty, and one woman spoke to me about it recently. She went to the pediatrician, and she was terrified because she didn’t want to see her daughter go through what she had to go through. How do you sit down with a 13-year-old and tell her she shouldn’t be eating any sweets, and she should stay away from bread, pasta, rice, and pizza? It’s complex, but it’s what seems to make a difference, even in the early stages.
Progression of lipedema
Catherine Seo: You asked a good question about the progression. There are three stages, and the final stage. There’s stage one, stage two, and stage three. Stage three has moderate and severe, and if you go the full spectrum, severe, it is fat that overlaps on itself and prevents motion and mobility. It’s horrifically heavy. There’s also the misguidance of it being a cosmetic issue, whereas it is absolutely not cosmetic, though it includes cosmetic aspects because it’s how we look. There is disfigurement, and there’s no way around it. For women, that’s part of the research I’ve done. In my work, I’ve looked at society’s judgment of women.
A research study I did was stunning to me because I see myself and many in the community with lipedema, lymphedema, and different disfiguring elements. The women I had in my study were thin, and by all standards would be considered beautiful, yet they also had deep levels of dissatisfaction with themselves and their bodies. There’s just a cultural issue. I’m sure you see it in obesity medicine, where someone comes in, and you think, “You want to lose weight? You look gorgeous!” It is such an internalized dilemma.
Upcoming virtual event
Dr. Eric Westman: How can people find you? And what are you involved in these days?
Catherine Seo: We host an event a couple of times a year that’s a deep-dive into all of this. We have a three-day event coming up, and by the time this is on YouTube, it may already be over, but it’s on September 27, 28, and 29. We have that coming up in the next couple of weeks.
Dr. Eric Westman: Where will that be?
Catherine Seo: It’s virtual, people can find out about us through lipedema-simplified.org. I share this because I know you’re prolific, you’ve written so many books. We’ve been invited to write a book on lipedema, and I’m one of three editors, along with Leslyn and Dr. Rockson from Stanford. The three of us are in the midst of it; we just met with the publisher, and it’s coming out in June of 2025. We’re working with experts around the globe to contribute chapters.
Dr. Eric Westman: I think Leslyn Keith did a couple of books on lymphedema, and those will be expanding, I’m sure, upon this. I really like her books as a starting point for a lot of information and actionable items.
Do you still have a community of followers as well?
Catherine Seo: Yes, we have a community, and we have workshops, seminars, and webinars. Mostly everything we do is online. One of the things that I think was just the way it happened, our first conference was planned in North Carolina, as it was in your neighborhood, and then the pandemic happened. We had to make a decision, and we decided to go virtual. What we found is we were able to have women join us from all around the world. We have community members in New Zealand, and Australia, all through Europe, England, South Africa, and South America. Lipedema is everywhere.
Where to find the lipedema community
Dr. Eric Westman: How do people find that? What’s the name of that group, and what platform is it on?
Catherine Seo: Lipedema-Simplified.org. You can find that community there. I find this with keto too. It’s through community that I learn; it’s through community that I answer questions and support others. It’s just wonderful. Your Academy, I know, has wonderful interaction.
Dr. Eric Westman: Yes, it’s so helpful, and it gets you off that feeling that you’re the only one.
That’s the good side of the internet. There’s a lot to criticize about the internet. Thanks for your pioneering effort in lipedema.
Catherine Seo: I so appreciate you and your work.
You can view the full video here.
