Understanding Lipoedema


In this 1-hour webinar, three expert speakers explored different aspects of lipoedema. Attendees gained insights into living with lipoedema from the patient perspective. Clinical talks were delivered by two founding members of the International Lipoedema Association (ILA), focusing on the definition of lipoedema, diagnostic criteria, and treatment options. The webinar was hosted by Dr Lise Geisler Bjerregaard (President of the Danish Association for the Study of Obesity) Key speakers: Mari-Mette Graff, Dr Anna Towers, Dr Francesco Greco More information: https://easo.org/understanding-lipoedema-patient-perspective-clinical-diagnosis-and-treatment/


Transcripts are auto generated, if you spot an error, please email enquiries@easo.org

Good morning, everyone. Hi, everyone. If you have just joined us, welcome to the latest webinar that's delivered by ESO comms network.

I am just going to start just in the interest of time and whoever is joining us can just follow along. So my name is Lisa and on behalf of ESO, I would like to welcome you to today's session, which focuses on understanding lepidema, patient perspective, clinical diagnosis and treatment. So today, as the audience, we're going to gain valuable insight into living with lepidema from the patient perspective.

And we're also going to hear clinical talks focusing on the definition, diagnostic criteria and treatment options. So we did have a change of chair from the advertised schedule, so we have Lisa today as our chair. And I'm just going to quickly introduce the house rules and talk a little bit about the webinar before I hand over.

So just a reminder, today's webinar will be recorded and it will be available on ESO Connect and I'll share the details after the session, along with any relevant links that are highlighted during the talks. So for any attendees who don't know, these webinars are delivered by ESO's Collaborating Centres for Obesity Management Network. And these are a network of treatment centres which are based across Europe.

So the ESO comms webinars are free and they're also held monthly, aside from some breaks during the summer and winter periods. And they aim to promote research and knowledge sharing across the comms to increase understanding of obesity. So please do share this information with your colleagues.

These, as I said, are free to attend. So if you know anybody who might be interested, please share the links with them. So before we kick off, as I said, I'm just going to let you know the house rules about the questions.

If you do have any questions, we have a specific question and answer session at the end of this webinar. So as the speakers are talking, please do drop your questions into the chat and these will be collated and read out towards the end of the session. We'll make sure that all your questions are answered.

In that Q&A session, you can also raise your virtual hand and use your microphone if you would really like to. It is an informal setting, so please, please do feel free to. Please follow EASO on Twitter, and if anyone is talking about the webinar on social media, please use the hashtag, hashtag EASOComms.

And I'm going to post that into the chat, too. So just finally, I'm going to share a feedback survey. And it would be really, really, really appreciated if you could fill out the feedback just for development of future events.

So that's it for me for now. Thanks very much for joining. And I really hope you enjoyed today's webinar.

We've got some excellent speakers and I'm really looking forward to hearing the talks. So I'm going to hand you over to our chair to introduce our guest speakers. Thanks again.

Thanks, Lisa. My name is Lisa and I'm in the epidemiologist working as a senior researcher at the Center for Clinical Research and Prevention in Copenhagen. I'm also a president of the Danish Association for the Study on Obesity, who is a member of EASO.

My main research area is in the long term health consequences of childhood obesity. So that is very different from the topic of today. But I think it's a very relevant topic for our members in the DSAF and EASO.

So I'm really much looking forward to these presentations today. And it's my pleasure to introduce our first speaker, Mette-Marie Kjerpe-Graf. She is from Norway and she's a patient advocate at the European Coalition for People Living with Obesity.

And also she's a deputy chair of the Norwegian Lymphedema and Lipidema Association. And today she will give us a talk on the patient perspective on living with a lymphedema. Please, Mette-Marie.

Thank you so much. First of all, thank you for letting me and my organization get this opportunity to talk about this important topic. Just to give you a little context on Norway, there is a huge difference between the different areas in Norway, whether you get help or not, if you have lymphedema.

It's not recognized as a diagnosis yet, and that's why it's such a big difference. I'm very fortunate. I live in the top of Norway, northern Norway, where we have this very dedicated surgeon who has been working with lymphedema for several years.

And I got three liposuction operations at his hospital. And I'm also provided with compression stockings completely free. I know other people in Norway who have to pay everything by themselves.

So it's a big difference. There's an ongoing study in Norway, just to give you a little more context on how to treat lymphedema the most efficient way. And the inclusion criteria is BMI lower than 28, which, of course, kind of makes a lot of noise in the patient group because so many of us are not even close to BMI 28.

Why is this so important for me and my organization? Well, that's because lymphedema affects our whole life. Even though my story is unique for me, I do think many of other people living with lymphedema can recognize some of the challenges and obstacles I've had in my journey. Not every one of us have severe obesity, but at my maximum, my weight was 150 kilos, which was BMI 54.

And of course, this together with the lymphedema caused a lot of pain and a lot of shame. So my working title for this speech was from pain and shame to empowered and self-confident, because that's how my journey has been. I also have binge eating disorder.

Not everyone, not many of people with lymphedema have binge eating disorder. But of course, if it's part of the picture, if the doctor tells you eat less, exercise more, it increases the symptoms and the shame and makes your health even worse. You can also meet anorexia in people with lymphedema.

So there are no automatic connections between eating disorders and lymphedema. But be aware of it, because if you do have an eating disorder, the way you meet the patient will have such a great impact on the health. Since I struggled so much losing weight, it wasn't impossible, but the disproportion always stayed there.

I thought maybe I have to do something radical. So I bought a gastric bypass and I lost 75 kilos. But still, my thighs were huge.

My overarms the same. So I have had several operations due to removing excess skin. Every single one of them have given me complications.

So there is no quick fix, neither to being overweight or having excess skin or having lymphedema. And I think it's very important just to respect the patient, to be honest about it. Because if you create this kind of hope, and the hope just cracks like a glass, it has a very negative impact on the psychological health, which is equally important as the rest of our health.

Our illness is so extremely visible. We carry it on the outside of ourselves. And the society today don't have many limits.

We do comment on each other's bodies, each other's appearances without being asked. There's a lot of microaggression due to advertising, fashion, news, TV, other media. So we're kind of living in this war against our body.

And when you're living in a war, it increases the stress, the fear. And actually, it's not a good life. So how to come from pain and shame to being empowered? Providers of health are also victims of the bias we see in society.

Constantly we're told there are easy ways to lose weight. Lose this much kilos in so many weeks or months, easy. No, it's not.

It's kind of easy to lose weight, but maintaining the lower rates is extremely difficult with or without lipidema. And being acknowledged for that kind of helps in the empowering of the patient. The pain is severe because not necessarily because it's physically hurting you, but living with constant pain.

Even in a low degree makes you lose your ability to focus. It's kind of a bell or a noise ringing inside your body the whole time. So it makes you not weak, but you can seem unfocused.

You can seem distracted and people will think, oh, she's not paying any attention. And it's kind of hard to be recognized for what it actually is. Because still not everyone with lipidema have a larger body, but very, very many of us have it.

And when we carry it outside, it's so visible. And since obesity very much is considered as a moral choice or a moral state, not a medical condition, we're being judged. We're being judged all the time.

And the pain, if it's there almost all the time, it affects on our private life due to intimacy, our ability to play with our children, those we are aren't our grandmother for. It affects on our ability to work, doing domestic things like cleaning, making food. It depends, of course, how affected you are.

But remembering that lipidema is not just affecting the physical part of the patient, but equally the psychological due to shame, depression, anxiety, maybe problems in talking with your spouse, lack of understanding at work. It affects the economy if you're not able to work, depending on the welfare system where you live. So when you're a provider, always remember the three parts of the health, the physical, psychological and the social part.

And if you only focus on the physical part, getting the lipidema fat away, of course, it will probably reduce the amount and experiencing of pain. But it will not fix everything. And that's important to remember.

In my meetings with different providers, I have met so much bias and there have been done so much research that clearly documents that people working in the health care system does not think that people with obesity deserve the same help and respect as patients without obesity. And even though they are well-educated. There's a disconnect here, guys.

How are we going to do this? Something's not registering. I'll just wait till I get the cue to go again. Hi, Margaret.

Yes, please. Please continue. Thank you.

Okay. Yes. And even though you as the provider think I don't have any bias or if you say, okay, to yourself, I do have some bias, but no, I won't let it show.

The patient will not notice. But I can tell you, if you are worried that you get this double chin, when you look down on the papers, or think about the little second muffin hanging over your belt, I will feel it. I will recognize it.

You might just with your eyes or just back off a little bit or you take this. I can feel the bias, even though they are not expressed directly. So.

A very important message for me as a patient advocate is work on your bias. Be aware of them. Recognize them.

Only then you can do something to change them. Because every health provider should really have this goal that they would help the patient in empowering so they can be empowered and self-confident, even though their body does not necessarily look like Cindy Crawford or whoever is the top model now. I've had several surgeries.

I said, yeah, my pain is less, but I kind of look like Frankenstein. But it doesn't matter, because even though I am my body, I also decided to think you have your body. My body is not the only thing defining me.

And in Norway, since there are no official hospitals who do this free for kind of everyone, there are private providers. And yes, it is important to get diagnosed early to get the help that's optimal for reducing increase of lipidema, help with weight management, help with compression. But we do need to be honest that there is a lot of money in the field.

And one of the surgeries in Norway, surgeons in Norway said to me, 50 percent at the official hospital said to me, 50 percent of the patients coming to me does not have lipidema. They just have obesity. But the same patients get surgeries in the private sector and have to pay for it.

And as said in the presentation of me, I also am the cheerleader in the patient organization for people living with obesity in Norway. We have the same kind of situation when it comes to gastric bypass, gastric sleeve, etc. People who don't get approved in our official health care system do get it in the private sector.

So. There's a lot of ethics to be aware of. Yeah.

I might just let you know we have two minutes left. Two minutes left. That's perfect.

Yeah. So my main message is I will repeat it because I know I've said it. Be aware of your bias.

Work on knowledge, work on communication, work on meeting and seeing and helping the whole patient. The physical part of the patient, the psychological part of the patient and the social part of the patient. You can't maybe do everything on your own.

But as the same way we patients have networks, I guess, and I know you have professional networks. So help the patient from pain and shame to empowered and self-confident. Thank you very much, Margit.

That was a really valuable insight. Thank you for giving us that. I really appreciate it.

I'm sure there will be some questions and we'll take that in the end. So now it's my pleasure to introduce our second speaker, Anna Tauers. She's an associate professor in the Department of Oncology and Family Medicine at McGill University, Høstendal, Montreal, Canada.

And she's also a founding member of the International Lipidema Association and the coordinator of the Diagnostic Criteria Working Group. And today she will answer the questions, what is lipidema and what are the diagnostic criteria? So welcome, Anna. Thank you.

Thank you very much. Thank you. I'll just share my screen.

Thank you. I really appreciated that patient perspective. Thank you very much, Mehmet.

So. One issue with lipidema is it's not very well studied to date. So I think it's accepted by the health care community that's interested in this condition, that the condition does exist.

But what are the boundaries? How do you define it? How do you diagnose it? There is an International Lipidema Association that created a working group about 18 months ago that over 2022 met and studied the condition, produced a report. I would just like to say that I have no conflicts of interest in this area. So this association has produced one document that I would encourage you to look at if you're interested in this condition.

So a paradigm shift and consensus. And based on the vast literature review of this document, the working group consisting of these seven individuals, including Dr. Greco, who will be speaking after me, met over the course of 2022 to create some suggested diagnostic criteria, which have now been accepted by the board of the International Lipidema Association. So the issue is this.

What is it? How do you define it? So clearly there is an issue here, and we know from histological studies that the tissues are different in lipidema compared to normal subjects, compared to obesity. There is inflammation of the tissues. There is abnormal pain.

But how do you define it? So our working group is very clear in that you do need the pain in order to diagnose lipidema. You can't just have the lipohypertrophy. So this is an early stage, and this person does have the abnormal allodynia or pain that can be elicited on the examination.

In addition to the lipohypertrophy. So this is the definition according to the ILA. So you have a disproportionate increase in adipose tissue in the legs, sometimes in the arms.

You do have the abnormal response to touch, which in a normal individual is not painful, but in the lipidema patient is painful. These patients also have coexisting conditions. Often there is overweight obesity, the mental issues that Marymet described very well, lack of self-acceptance.

So that comprehensive treatment has to include, has to be holistic. These are the diagnostic criteria that our working group came up with that has now been accepted by the ILA and is posted on its website. So you have to have the disproportionate fatty tissue and the enhanced sensitivity to touch with objective tests during the examination.

Now, in this scheme, we talk about a pinch test. One of my colleagues, younger colleagues, has said, well, maybe it's unethical to pinch the patient to elicit the pain because you want to do it when they're distracted, right? But if you look for edema in the thigh and you're pressing to check for edema in the thigh, for example, which is an acceptable test during examination, a normal patient will not find that painful, whereas a lipidema patient will. And you need normal hands and feet.

Now, this other criterion under B here is a minor criterion. So the cup sign, the lipohipertrophy at the level of the ankle or sometimes at the elbow or the wrist. So our group had some very interesting discussions over the course of our meetings.

And we did not, of course, answer all the questions because we need more research to be able to answer these questions. And how can you do research if you have not defined what lipidema is? So it becomes a vicious cycle. You need a definition of lipidema so that you enter lipidema patients into your study as accepted internationally.

And then you can gain more knowledge that then helps us better define what lipidema actually is. So we did not finally answer this question. You need histological studies.

What's the difference between lipohipertrophy and normal fat? So we're just beginning to understand now. And there may or may not be differences. Some studies show some slight differences.

And of course, you have to separate these patients from also people that have obesity, that have secondary lymphedema related to obesity. So it's actually very, very complex. So these are all questions that came up during the group sessions.

And we do not have all the answers. But we did agree on the diagnostic criteria. We were not convinced that lipidema goes through stages as opposed to having many of these patients develop obesity.

So there's still a lot of discussion about staging and also the impact of weight loss with the suggestion that weight loss might have an impact on the lipidema. So we used an organized model to work with, the PICO investigative model, to ask the questions, to look at the literature. And we also looked at the Dutch guidelines, which preexisted ours, which were more complex.

And we deconstructed all this. For example, there are a lot of papers that talk about easy bruising. Our group was not convinced that easy bruising exists in lipidema.

So we need further research to look at that. So that's one example of something that we omitted. Distal fat tendrils of the knee.

Well, we're not convinced that that exists. So we deconstructed this. So our scheme is a lot simpler.

So there is not enough research to date. We need more research. We had very few primary studies to look at.

But we looked at the reviews already done by our colleagues in the ILA. What we did think was important is the diagnosis should not require biopsies or expensive imaging studies. The criteria are made using the physical history and also the history of the patient, the medical history.

One thing we're very conscious of is that there are many patients who need treatment. Who might not have lipidema. Who might need compression for other reasons, such as obesity.

Obese patients benefit from compression to prevent lymphedema. But healthcare systems do not cover treatments unless there is a diagnosis of lipidema. So there is pressure on healthcare providers to make the diagnosis for financial or insurance reasons.

And this is a major consideration. And the impact on research I've already talked about. If you don't agree on the definition, how can you do research? So this is the scheme again, as I say, accepted by the board of the ILA.

And we hope that such a scheme will facilitate research in the future and help us better understand this syndrome. So again, this reference I strongly recommend, which is the longer report by the Lipidema Association. And our report is also available on the website of the ILA.

And those of you that are interested might want to join. So you have access to all the recent literature. All the literature on lipidema can be accessed through the website for people that become members of the ILA.

They have a very small fee to join. Thank you very much. Thank you very much, Anna, for a great talk.

I think it's very important work that you are doing. That's a great need for that. Please ask your questions in the chat and we'll take them in the end.

And let me introduce our third speaker, Francesco Greco. He's the director of the Biologic and Metabolic Surgery Unit at the Fully Ambulant Foundation Hospital in Brescia in Italy. And he's also a founding member of the International Lipidema Association.

And he will give us a presentation on the surgical and non-surgical treatment of lipidemia. Thank you, Lisa. Thank you to Jeso.

For giving me this wonderful opportunity to share our knowledge on lipidema treatment. I try to share my presentation. Okay.

Could you see me? Yes. Okay. So as we have heard from previous presentations, the treatment of lipidema patients requires an holistic and interdisciplinary view.

Since we are treating a chronic patient, we must remember that lipidema is more a syndrome than a disease. And relapses are the norm. For that reason, compliance is essential for a long-term stabilization of results.

Even the most radical and invasive treatment, the surgical one, must be placed in a context of interdisciplinary follow-up. We have four main issues to address when we talk about lipidema. This proportion that is obviously a static problem, but in severe cases can become a functional problem by restricting movement and mobility.

Physical pain, which has the characteristic of chronic pain and which, in addition to reduce the quality of life, reduces physical activity and predispose to weight gain. Weight gain, most patients with lipidema, even those who are normal or underweight, experience a difficult relation with scales. So weight control is central to the management of lipidema.

We can schematize as a pyramid the treatment pathway of patients with lipidema and obesity. At the base of the pyramid is the recovery of a healthy lifestyle. This presupposes physical activity.

Women with lipidema often restrict movement because they feel their legs are inflamed and heavy. All forms of movement are useful for keeping weight under control and keeping the muscles toned. Sarcopenia, especially in the lower limbs, must be prevented and treated obsessively.

The vibrating platform, for example, is effective for toning and reducing leg inflammation if used constantly. Physical activity in water, like swimming, is preferred. Yoga and oriental discipline are also recommended.

Constant physical activity, in addition to keeping muscle tone and improving mobility, has a local anti-inflammatory effect. It also reduces levels of stress hormones like cortisol and can improve sleep quality. In general, there are no contraindications to any type of sport, according, of course, to the subject response to exertion.

Nutrition. An anti-inflammatory diet is appropriate for long-term weight management in patients with lipidema. Reducing the consumption of ultra-processed fatty foods, salt, sugar, and even sweeteners are a good rule.

The inflammatory stress this food cause is well established and lies in the modification of the biology of the microbiota and intestinal permeability. Those foods are known to promote over-eating and weight accumulation by acting unfavorably on hormone excess, favoring insulin secretion and fat accumulation in the insulin-sensitive tissue, such as lipidematous fat. To this end, a modified Mediterranean diet with a high intake of vegetables and a reduced amount of simple carbohydrates, simple sugar, and red meat is proved effective.

In an Italian study by Di Renzo, focusing precisely on this type of diet gives us confirmation of this, if ever there was need. Some studies show the effectiveness of ketogenic diet protocol. In my practice, it is common, especially in the initial phase, to propose a ketogenic diet cycle.

In the short term, the results are encouraging because weight loss is rapid, pain and heaviness in the legs is reduced or disappears in the short term and in a good percentage of patients. And not insignificant benefits lies in the ability of the state of ketosis to improve mood and encourage the patient to continue the treatment. Another study from Poland demonstrated superiority in terms of weight loss and reduction of thigh diameter of the low-carb, high-fat diets over the medium-carb, medium-fat diets.

The slides show the effect of a three-month anti-inflammatory diet and belongs to my nutritionist, Giorgio Valeri. Psychological support, so this is obviously not my area of research, but collaboration with psychologists specialized in weight management and body image issue is essential. The treatment of an underlying eating disorder.

Looks like Francesco potentially had some internet issues there. We'll just give it a minute and hopefully he rejoins. Okay, can I go ahead? Yeah, great.

That's great. Thank you. If you just re-share, I can't see your screen anymore.

Okay, on the second step of treatment of pyramid we have pharmacological therapy. Nowadays, we all know we have molecules that are effective in reducing weight and some studies also speculate on possible direct anti-inflammatory effect of semaglutide. To my knowledge, no specific studies on GLP-1 analog are published on lipidemia patients.

I have tested the efficacy of GLP-1. Sorry, Francesco. Could you please stop me there? It doesn't seem that your screen is being shared anymore.

If you could please try and re-share it. I think maybe something happened with the internet connection and it cancelled. That's okay.

Sorry to interrupt you. Okay, I'll try another time to share my slides. Sorry.

That's okay. Do you see the slides? Yeah, we're back. Thank you so much.

Okay, we're speaking about pharmacological therapy. So, I'm saying that I tested efficacy of GLP-1 analog in my practice and it is very effective if combined with diet and compression. Compression therapy, physical therapy.

Physical therapy is crucial in the management of a lipidemia patient. People with pure lipidemia do not have the previous edema, but benefit from compression achieved either through multi-layer bandaging technique or through the use of flat, mid-year compression garments. The garment, sometimes custom-made, should be worn all day, particularly during daylight hours when the patient is walking.

It is the muscular action that provides intermittent compression and that generates an anti-inflammatory and antalgic effect. This slide belongs to Domenico Corda, a friend and lymphologist and co-founder of GLP. Compression helps to stabilize lipidema and improve functionality.

Obviously, this device must be prescribed and carried out by a highly competent person, especially in the most complex cases where angio- and lymphedema problems coexist. As we shall see, these devices are also fundamental in post-surgical rehabilitation after liposuction. Let us now turn to the surgery chapter.

There are few scientific papers on the effect of bariatric surgery in patients with lipidema. Most of them are case reports or small series. If a patient with lipidema and obesity should underwent bariatric surgery is fundamentally a wrong question.

Although BMI does not comprehensively define obesity, superimposed on lipidema, it is obesity that should be treated. It should be treated first because obesity is a factor in the progression of lipidema and don't offer a vein if the patient is not brought back to a reasonable weight. In my clinical practice, I have no reluctance to propose bariatric surgery to patients with a body mass index above 35 and in selected cases even lower.

In fact, I consider lipidema a comorbidity like others, such as hypertension, diabetes, and hypercholesterolemia. But what about bariatric surgery? There are no comparative studies on this. The work of the paper from Birch demonstrates the effectiveness of sleep gastrectomy and room-wide gastric bypass in reducing weight and tight circumference proportionally to what happens in control patients.

I personally prefer surgery with a metabolic component, such as OAGP. A metabolic surgery, in addition to having a direct action on hormonal axis, can guarantee a better long-term result in younger patients. It is common in my practice to reoperate patients with weight regain and recurrence of lipidema after poor restrictive surgery, such as gastric band or vertical band gastroplasty.

This surgery should be discouraged, in my opinion, as they encourage the acquisition of heating behaviors, such as sweet eating, that worsen lipidema and predispose to weight gain. What about liposuction? Body contouring surgery is the last step of the lipidema treatment. Body contouring surgery in a patient with lipidema has to take special aspect into account.

Body contouring should be planned when substantial weight loss has been achieved or in selected cases when indication is purely functional with the aim of improving mobility, whereas abridging treatment for other interventions, such as hip or knee replacement. Liposuction for lipidema is an effective treatment in reducing pain and improving disproportion. But liposuctions remain an indication in selected cases in patients who are normal weight or after substantial weight loss.

Bearing in mind that in severely obese patients, even after losing weight, the functional status of the lymphatic and vascular system does not return to normal. It can, therefore, precipitate even serious postoperative complications, such as ischemia and secondary lymphedema. Liposuction is today performed with modern mini-invasive technology.

This water-assisted technology, as well as technical technology, is known to be a lymph-sparing liposuction. And you see on the right a very gentle movement required to remove fat. You see the water jet.

Here is an example of what can be achieved in a single session lasting about three hours with a water jet-assisted technique in a previously obese patient that lost weight with diet. The postoperative course, especially after liposuction of the lower legs, ankle, and calf, needs the congestive treatment with the use of fattening garments to speed up healing and reduce edema and pain. Definitive healing is achieved after three to six months.

In some patients, several surgical procedures are necessary to treat legs, thighs, and arms. Therefore, also in relation to the risk-benefit and cost of procedures, careful planning has to be done together with the patient. So, finally, in the end, I would like to recall this proposal by the HeLa, these fact sheets, which summarize everything I said in the presentation, hoping that it will have the right diffusion.

You can find it on the HeLa website. And thank you for your attention. Thank you very much, Francisco.

And thanks to all the speakers in this session. Great talks. And we have several questions coming in here.

I'll just go to the chat. So, the first question is, is there any country in Europe, as far as you know, that offers operation on lipid as part of regular public health care? I'm not sure if you mean lipid or epidema. Or is it part of public health care in any country? Does any of you know that? Anna or Francisco, can you answer this question? Hi, Lisa.

I'll try to find the question. Could you repeat, please, the question? Yeah, so it's the second comment in the chat. Are there any countries in Europe, as far as you know, that offers operation on lipid as part of regular public health care? Yeah, I know.

The first presentation from Mary said that in this country, some hospitals release interventions for lipid as a public health care. In Italy, we do not. But in some cases, after massive weight loss, with bariatric surgery, or for other reasons, you can have post-bariatric surgery, reductive surgery.

So, only in some cases. Only in some cases. I'm in North America, so I can't answer that question.

But in general, it is not covered by public health systems in North America. And then there's another question. How common is lipidema in adolescents seeking obesity treatment? Does any of you know that? I will attempt to answer that.

The thing about prevalence is people need to diagnose it, right? And if we don't have diagnostic criteria, how can you diagnose it? So, if your diagnosis of lipidema has to include the abnormal pain, the allodynia, the prevalence of lipidema is much smaller than some publications have suggested. It's not 10% of all women. It's much rarer than that.

So, I don't think we can start defining better the prevalence, you know, in adolescents or older or whatever, until people adopt the diagnostic criteria and we start to document this. So, we need very basic prevalence studies, which we don't have. We just have a general idea that it's not a common condition.

But we don't know what the actual prevalence is. Do we have any idea of the average age of onset? No. But do we see any patients in adolescence with this disease? Yes.

Well, I mean, the textbooks say that it starts in adolescence or, you know, just after puberty, at the time of puberty. I mean, that's the classical teaching. But does it actually start then? You know, we don't know.

We don't know the answer to that. No. Another question.

I lost 60 kilos from sleeve surgery, but still my lower lip and especially thigh and side knee lump is there sagging. No pain at all. Is it just lipopoietrophy? If there is no pain, it is not lipidema.

Okay. And that relates, I think, to another question we just had here in the end. So, that's a question for you, Anna.

Jens says, curious to hear the rationale for why is pain a key part of the diagnosis criteria? Are there examples of this condition without coexisting pain? Well, you have to differentiate between normal fatty tissue and a disease, right? So, there is a difference between just the lipohypertrophy. If you look at the tissues, if you do histological studies, with lipidema, where you have the pain, you have inflammation, you have fibrosis. Whereas with lipohypertrophy in normal people, you don't.

And then the inflammation translates as pain. So, from the limited histological evidence we have, there is inflammation and increased fibrosis in lipidema, which is linked to pain, which you don't find in lipohypertrophy. I have a comment about what Anna said.

We have to say that sometimes during the follow-up, some lipohypertrophy can become lipidema. So, lipidema does not exist from the origin. So, sometimes the definition of lipidema needs time.

Some cases are not clearly defined. So, sometimes there is also time that gives us the answer. Can I add to that, Lisa? My point with the adolescents is that sometimes I have patients coming in in obesity treatment.

And maybe the mother comes with them and she has diagnosed lipidema. And they have the same build. So, sometimes you have the gut feeling that there is some genetics there and that the child might get lipidema.

But we don't have yet, at least that's what I understand, we don't have any criteria yet to say this patient probably is going to get lipidema. And we need to treat them differently than the next patient that comes to the door. So, that's more what I was wondering.

And since we haven't had diagnostic material, do we know anything about genetics yet? No. Does it run in families? No. We're just beginning to learn about the tissue, the histology.

That there are inflammatory products that make it different from lipohepatrophy and fibrosis. That's what we know. We also have a question on why isn't there more collaboration between the different countries? I don't understand the question.

I think the International Lipidema Association is proving that we have collaboration. So, people are coming from European countries, from North America, as part of that association. So, I don't understand the question.

I think we are getting together. Yeah. So, is there a contradiction between whether lipidema is a complication of lipidemia? Yes, there's no question that lipidema is a complication, especially since a large percentage of lipidema patients also become obese.

And lipidema is a very, very well-known complication of obesity. So, is it the lipidema? Is it the obesity? With obesity, the excess fat will increase the risk of lipidema. So, even with pure lipidema, over time, they may develop lipidema as well.

Yeah. Do we have more questions? Lisa, maybe you can help me. Have you seen more questions that I haven't seen? Yeah, there's one here.

There seems to be hormonal effects, worse with puberty and menopause. That's also what you just said, right? Yes, that's the classical teaching. So, we have another question from Tony, who is a lipidema patient.

And it is for Dr. Greco. WAL versus PAL, I had both and PAL is smoother and had better recovery. Do you reject all other methods? Sorry, I think you're muted.

Okay, all other methods of liposuction, you mean? Yes, I think so, from Tony's question. Okay, I see the question. So, no, I do not reject, but every type of modern liposuction has its advantages and disadvantages.

But anyway, even if you use a very technological type of liposuction, it depends how you use it. So, even with water liposuction or power assisted liposuction, you can have damage if it is used incorrectly. So, it is not a question of what type of technology you use, but how you use.

So, I do not reject other types. I prefer water jet liposuction because I have experience with this. But anyway, it's a type of surgery that has a very, very, very neat time.

It's not the standard aesthetic liposuction. It's a three, four-hour surgery with a large amount of fat that has been removed. So, you can have also big damage of vessel, lymph and skin if your practice is not correct.

Independently of the type of liposuction that you use. I think soon we are running out of time. Lisa, do we have time for more questions? Yes, if the speakers are happy, we can take one or two more questions and then probably no more in the chat.

But I do see one or two that haven't been answered. So, can you clarify the edema component and if no edema, why compression? And I think you already clarified there is edema. No, there is no edema with lipedema.

But especially if it's combined with obesity, you can get lymphedema. But pure lipedema itself, when you look at it, you know, ultrasound, whatever, you cannot see edema. However, there is inflammation.

And as Dr. Greco said, compression exercise and all those lifestyle interventions help inflammation. So, they will reduce the pain. Compression will reduce the pain, combined with the other lifestyle interventions.

And do we have any predictive facts regarding who progressed to lymphedema? We need studies where we diagnose it properly and we follow these patients properly. So, to date, studies have mixed up these patients. Some have pain, some don't have pain.

You see, you don't have a cohort of the same type of individuals. So, we need more studies about that. So, we can't really definitively answer that at the moment.

And I think it relates to the discussion about obesity. That it's probably more diseases that we're currently combining into one. Yeah.

I think time is up. Thank you for all your questions and thank you for all the great presentations. Thank you very much.

Thank you, everyone. I've shared a link for the feedback in the chat. If you can, please, please do complete the feedback.

Thanks to all of our speakers and our chair. And thank you as the audience. Thank you.

Thank you. Bye.