Why Lipedema Resists Diet and Exercise with the Lipedema Foundation

[01:04] Dr. Linda Bluestein: Welcome back to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD, a Mayo Clinic-trained expert in Ehlers-Danlos syndromes. Today we're going to be talking about lipedema. I'm so excited to talk about this because this is something that is taught even less in medical school than connective tissue disorders like the Ehlers-Danlos syndromes. [01:21] Our guests today are two people from the Lipedema Foundation. We are going to be speaking with Kasi Grosvenor, who is an MBA and project manager at the Lipedema Foundation. She lives with lipedema, mast cell activation syndrome, including hereditary alpha tryptasemia, POTS, and hypermobility. Drawing on both her professional background and lived experience, she is passionate about amplifying the patient voice, raising awareness of lipedema, and advancing understanding of its overlap with related conditions. Jesse Cochrane is VP of Research at the Lipedema Foundation. After earning her BS from MIT and PhD from Yale University, she became a research fellow at Mass General Hospital and Harvard Medical School investigating epigenetics and chromatin remodeling. Jesse is committed to advancing the science and nurturing the research community needed to uncover the pathophysiology and etiology of lipedema. [02:11] This podcast is for education only and is not a substitute for personalized medical advice. Stay to the end for our hypermobility hack. Here we go. [02:57] Well, I'm so excited to be here today with Kasi Grosvenor and Jesse Cochrane. Thank you so much for coming to chat with me today about lipedema and the Lipedema Foundation. It is such an honor to have you both here.

[03:12] Kasi Grosvenor: Thank you. It's great to be here.

[03:13] Jesse Cochrane: Such an honor to be here. Thank you.

[03:15] Dr. Linda Bluestein: Lipedema, we know, is common and it's so underrecognized, which — wow, this is sounding familiar, right? Common and underrecognized and overlapping with other conditions that we talk about on Bendy Bodies a lot: hypermobility disorders, connective tissue disorders like Ehlers-Danlos syndromes. We have talked about this before in episode 104 with Dr. Karen Herbst, which we will link in the show notes. I want people to definitely check out that episode as well. And today we're going to be talking about bridging lived experience and research. I want to start with you, Kasi. Can you, for listeners who might not be aware of what lipedema is, tell them about it? What should they know?

[03:58] Kasi Grosvenor: Yeah, absolutely. So lipedema is a chronic medical condition that is characterized by excess adipose tissue that primarily appears on the lower body — usually around the legs, the upper legs, the hips and the buttocks — but it can also be on the arms. It can occur on the abdomen. It can occur lower on the legs. And it is very different from obesity and lymphedema, two conditions which it is frequently misdiagnosed as. But it does cause that symmetric buildup of fat tissue that can become quite painful and quite debilitating for those that suffer with it.

[04:40] Dr. Linda Bluestein: Okay. And Jesse, from a research perspective, how are we actually defining and classifying lipedema?

[04:48] Jesse Cochrane: Unfortunately, I think with a lot of these diseases, lipedema is a clinical diagnosis. There are no biomarkers. It's defined by expert clinicians diagnosing it, and it's characterized by — as Kasi was saying — this symmetric but disproportionate accumulation of adipose or subcutaneous fat. So often on the legs and the hips and the lower legs, and it often spares the hands and the feet, and it comes with pain and tenderness in the adipose. Those are the big things. [05:17] And then also the specific lipedema fat tends to be resistant to traditional diet and exercise. I think, as we learn more, the definition is still evolving and we are working on some more specific biomarkers and other ways to define it for research and for clinicians.

[05:42] Dr. Linda Bluestein: Yeah. It's like the quandary that we have with hypermobile EDS and HSD without having a biomarker and being clinical diagnoses. It's very, very challenging. And then you have people who get the clinical diagnosis, but they go to somebody else and that person might say, well, I don't think you have that. And it's very, very frustrating. We definitely need biomarkers for these conditions.

[06:03] Jesse Cochrane: Yeah. I don't know if this is true for EDS, but for us, there are different definitions in different countries. It's not even universally clinically diagnosed. So it's very complicated.

[06:18] Dr. Linda Bluestein: Yeah. I would definitely say that that's true. Hypermobile EDS — we have the 2017 criteria and now we have the road to 2026, so that criteria is supposed to be coming out at the end of this year. But at the same time, even within the US, there is definitely a vast difference in how people are assessing and diagnosing these conditions. So it's really frustrating and it kind of goes both directions, where there are people who will go in to see somebody and they don't go through the criteria at all, and then other people where they're sticking by it so strictly: "Well, you used to be hypermobile, but you're not anymore, therefore you can't have hypermobile EDS." I don't agree with that. So yeah, it's hard. It's really hard. So Kasi, if lipedema affects so many women, why is it still underrecognized and underdiagnosed? Of course, we hit on one thing — the lack of a biomarker — but what else?

[07:05] Kasi Grosvenor: Yeah, I think there are actually several things at play here, and I think very similar to what we see with hypermobility disorders. The amount of knowledge that practitioners receive in medical school about these conditions is nonexistent. I've seen the write-up on the type of education that you typically would see for Ehlers-Danlos. It's basically a paragraph. In most medical school curriculums, you're not even going to get a paragraph about lipedema, and even lymphatic disorders in general are brushed over with a few sentences. So I think that is one problem that is really causing it to be underrecognized. [07:49] Secondly, I think we have seen this across the board with diseases that tend to affect women more than men. Women are often dismissed as having things that are in their head, or being a hypochondriac, or highlighting things in their health that aren't taken seriously. [08:11] And third, I would say that because lipedema is so often confused with either obesity or lymphedema — both of which may co-occur, but it is not the same condition — those misdiagnoses are probably some of the biggest factors influencing why it is still so unrecognized. [08:33] At the same time, awareness is really growing and we are very happy about that. The artist Doja Cat recorded a TikTok saying she thought she had lipedema, and it was wonderful because it actually increased a lot of public recognition. We need that public recognition to move away from patients self-diagnosing and actually get into the hands of practitioners — and that follows through to insurance companies and ICD-10 code assignment and all of these things. So there are a lot of factors that are causing it to be so underrecognized, while it truly is not that uncommon for women.

[09:27] Dr. Linda Bluestein: Yeah. It's amazing what happens when somebody with that kind of a platform uses it in a helpful way like that. I feel bad for them that they have the condition, but at the same time, it's good that it helped raise awareness. And I have to say — I graduated from medical school a long time ago, quite a long time ago. I literally learned nothing about lipedema whatsoever. And I remember the first few times that I saw the word, I thought people were referring to lymphedema but writing it incorrectly. I thought they were just calling it the wrong thing. But I kept having more and more people say, I want you to cover this topic on the podcast, and Dr. Herbst's name kept coming up over and over again. So I researched her and I was like, yes, this is a topic that we do need to cover. This is something that overlaps a lot. It's super relevant, super important. And so I'm so glad we're having this conversation. And speaking of ICD-10 codes — Jesse, do you know, are there plans in the works for there to be an ICD-10 code for lipedema? And also, what are the biggest gaps in awareness amongst clinicians and researchers, would you say?

[10:42] Jesse Cochrane: Kasi covered a lot of the big gaps. There are plans for an ICD-10 code. I think that's been ongoing for years, though. It's been presented in front of whatever board makes these decisions several times and revisions have been made, and I think it's still a work in progress. It would definitely help with everything if there were a way to track it accurately in medical records. [11:09] The only other thing I would add to what Kasi said about the gaps: one of the biggest is, as we've discussed, simply knowledge and recognition of the condition. The other thing is funding. For a disease that affects so many women, the funding pool is really small. There's no impetus to do the research because there's no way to get grants to do the research. And I think until more research is done, there's always going to be this gap. And science in this country at the moment is in a pretty sad state. So it's all cyclical and self-reinforcing, I think.

[11:50] Dr. Linda Bluestein: So can you give me an idea of the scope of the problem, Jesse? And also, is this something that exists on a continuum or a spectrum — like some people have a mild case and some people have a severe case? Any thoughts about that?

[12:14] Jesse Cochrane: So we don't have good prevalence numbers, and this is partly due to the lack of ICD-10 codes. The data really range across different studies from about 1% to 10% of women suffering from lipedema — which is huge. Even at the low end, that's still a massive number of people. And the way lipedema is traditionally considered is in stages: stage 1, 2, 3, and 4. [12:46] It's not clear if it's progressive — that's still an unknown in the field. But there are certainly different symptoms associated with the different stages, which are again clinically defined based on the amount of disproportion, the amount of pain, and the texture and feel of the adipose tissue. That said, things like pain are not necessarily correlated with stage, and the symptomatic expression of lipedema and the way that a person's body feels is a totally different question. But yes, there is definitely a spectrum. We're still learning a lot every day.

[13:36] Dr. Linda Bluestein: And pain is an experience. Pain is what you're experiencing and nobody knows what pain you're experiencing except for you. We know that the amount of, quote, damage in your body versus the pain that you experience is not necessarily perfectly correlated in anything. So I don't know why it would be perfectly correlated in lipedema — that would be a unique setting. But yeah, people can have a lot of things going on in their body and not have as much pain, and other people have a ton of pain without as many objective findings. So that's obviously very, very frustrating for a lot of people.

[14:10] Jesse Cochrane: And I think with a condition like lipedema, which involves chronic pain, some people can become somewhat inured to it. They're not necessarily able to say, "This is very painful," despite the fact that fundamentally it probably is. They just aren't necessarily paying attention to that pain anymore.

[14:27] Kasi Grosvenor: Yeah.

[14:27] Dr. Linda Bluestein: And there's the everyday pain and then there's the flaring.

[14:32] Jesse Cochrane: Yeah. Different.

[14:32] Dr. Linda Bluestein: Yeah, most definitely. Speaking of pain, Kasi, what are the most common signs and symptoms that people should be looking for?

[14:41] Kasi Grosvenor: Absolutely. I was really struck recently when I was sitting in on UVA's Ehlers-Danlos Research Symposium at how many symptoms women with lipedema are experiencing that are also seen in hypermobility spectrum disorder. So I will name just a few of those. [15:01] I think one of the first symptoms — visible even at puberty and sometimes as early as toddlerhood — is the shape of the legs. With lipedema, as with every disorder, it can vary widely between patients, but there are kind of two physical appearances. The first being a very pear-shaped body, and the second being more columnar, almost like a tree-trunk leg. Some of those things become visually observable before the patient even reports any symptoms. [15:42] The other symptoms you'll start to notice — again, overlapping with hypermobility — are very easy bruising. You will generally, in a person with lipedema, experience pain, particularly if that tissue is pressed on. So in the areas where lipedema grows, typically on the legs and sometimes the arms, when you palpate that tissue, it is very painful. Patients will complain of their legs being very heavy, like walking around with concrete bricks. There will often be a textural component felt under the skin, which may be as minor as something like a Beanie Baby or rice feeling under the skin, all the way up to lobules and big nodules that are very painful when pressed on. [16:37] Another thing you will notice — and this is a differentiator between obesity and lipedema — is that when you have this excess buildup of fat, typically in a person with lipedema, you are going to see very normal-sized hands and feet. The fat pattern carries down to either where the ankle is or where the wrist is, sometimes even the elbow, and it's almost like a line of demarcation where that fat abruptly stops and the hands and feet are spared. [17:09] Those are just a few of the things you will notice, and that is why it's so important for the clinician to talk to the patient about their history and what they've observed. I would say the other leading thing to pay attention to is if you are minding the foods that you're eating and you are exercising and moving your body, and that excess fat seems very resistant to weight loss measures that would work for other people — like caloric restriction or a lot of cardio — then you may be experiencing lipedema, because those fat cells are typically very resistant to those measures compared with someone with regular standard fat.

[18:02] Dr. Linda Bluestein: So I made several notes as you were talking. One thing I thought of was: when you talked about leg heaviness, that's tricky because that can also be related to pelvic congestion syndrome and/or May-Thurner syndrome. And the other thing I'm thinking is differentiating the pain with palpation and light touch from fibromyalgia —

[18:30] Kasi Grosvenor: Yes.

[18:30] Dr. Linda Bluestein: — or central sensitization. So, like you said, it becomes tricky because there's a lot of overlap in presentations.

[18:39] Kasi Grosvenor: You're absolutely right. And I cannot tell you — I'm not going by data and science here, I'm going just by the hundreds of patients I engage with on a fairly regular basis — how many patients were actually diagnosed with fibromyalgia because the doctor was like, "I don't know what's going on with you, so I'm just going to put this diagnosis on you." And then later on in life, they realized they actually had lipedema. And the other conditions you mentioned are ones I see pop up very often. In my short 5 years of experience with lipedema, I have never once met a woman who had lipedema only and not several other comorbid conditions.

[19:24] Dr. Linda Bluestein: Yeah, and it's important because if you don't have the right diagnosis, you're not going to be looking at the right treatments. And if you don't have the right diagnosis — I said ICD-10 code, but I probably should have said ICD-13 or something, because by the time we actually get a code, we're probably going to be a few variants down the road, unfortunately. But having the right diagnosis is critically important in order to have the right treatment and for tracking purposes as well. [19:54] So this question could be for either of you — you two can decide who's going to answer — but I feel like it's really important to distinguish between lipedema and cellulite, because I feel like that's something that is still a little bit confusing, even in my own mind. Can you explain the difference there?

[20:15] Kasi Grosvenor: I'm happy to take a stab at that and have Jesse add on. Fantastic question. First of all, it is also something that we have recently blogged about on the Lipedema Foundation website. Cellulite is typically more of just an appearance without symptoms, whereas lipedema typically has a number of symptoms associated with it. And that's where that clinical exam becomes so important. So if you have someone who just has a little bit of dimpling and texture in their skin, but they're not reporting that their legs are really heavy and they're finding it difficult to walk, and they are able to lose weight through traditional methods including dietary changes and exercise — those are typically going to be your more cosmetic instances, and they're probably not going to have things like accompanying brain fog and fatigue and all of these things. I would say those are probably some of the key differentiators. That's where a clinical exam becomes so important — for the clinician to actually palpate that tissue. As lipedema progresses, that texture changes under the skin, whereas cellulite just kind of doesn't change a lot over time. It's typically just something that is there visually, but it's not impacting the person's mobility. It might bother them in terms of their appearance, but it is not physically causing painful symptoms in their body. Jesse, anything you would add to that?

[21:56] Jesse Cochrane: I would just say that lipedema tissue also tends to be more prone to bruising, and I think that is probably another distinguishing feature from cellulite.

[22:05] Dr. Linda Bluestein: That's very helpful. And any other objective criteria or validated diagnostic tools or anything else, Jesse, that clinicians should be looking for when they're doing their exam?

[22:18] Jesse Cochrane: We are trying to develop some standardization of tools for research purposes so that we can collect all the data and hopefully start to develop some objective diagnostic tools. But at the moment, nothing really exists. There's a lot of work going on around imaging data — because we do know that lipedema leads to disproportion, it seems like there might be good information we should be able to extract from imaging and use as a diagnostic tool. All of this is ongoing research, trying to understand what data already exists and whether we can extract meaningful measures from it. But at the moment, it is all clinical diagnosis by an expert clinician.

[23:11] Kasi Grosvenor: I would layer on to what Jesse said. There are definitely researchers doing things with MRI and ultrasound that are starting to note some of these changes, but those are not typically going to be resources available in nearly any clinic. We do have on Lipedema.org a clinician's guide to lipedema that can literally walk any clinician through what questions to ask about the patient's history, what physical examination steps to take — whether through visual inspection or palpating that tissue — even doing the Stemmer sign to see if there is comorbid lymphedema occurring. As of right now, that clinical examination — very similar, I think, to what you've seen in hypermobile EDS — actually talking to the patient and visualizing what is happening in their body is our best test right now.

[24:06] Dr. Linda Bluestein: And for listeners who are not familiar, can you tell us about the Stemmer sign?

[24:16] Kasi Grosvenor: I am not a clinician, so I'm describing this as a patient, but essentially there is a joint toward the toes, and there is a way that the skin is pinched there, and watching how the skin responds — how quickly it retracts or goes back flat — is a way that they can differentiate between lipedema and lymphedema. But again, to confuse things, these conditions can co-occur. So that's where a clinician having knowledge of both conditions and being able to differentiate whether it is one condition, the other, or both on top of each other becomes important.

[25:02] Dr. Linda Bluestein: And Jesse, what are the ways that you see lipedema getting mislabeled in clinical practice? What are the big diagnostic pitfalls that you're seeing?

[25:11] Jesse Cochrane: So I am also not a clinician — I'm a PhD researcher — but from what I understand, and I think from Kasi's lived experience as well, it's obesity. Lipedema and obesity are definitely overlapping conditions, but they're distinct. Obesity doesn't necessarily lead to this painful sensation in the adipose. While it might impact your mobility, I don't believe it leads to this feeling of heaviness and the concrete legs that Kasi describes. And also it doesn't respond to exercise or caloric restriction the way obesity does. So an obesity label isn't that helpful in treating lipedema. The other mislabel is lymphedema, and while there is overlap again between the two, the underlying biology is very different. So those are, I think, the ways that it gets mislabeled the most in clinical practice. I don't think we can emphasize enough how important it is to listen to the patient and really understand what's going on in that person's body.

[26:17] Dr. Linda Bluestein: And I know you said we don't have great prevalence data on lipedema, so there may not really be an answer to this question, Jesse, but what kind of overlap is there between lymphedema and lipedema? Like are we talking more than 50% of the time? Any thoughts about that?

[26:37] Jesse Cochrane: It's not more than 50% of the time. I think it's more on the order of 20% of the time, at least in the studies that I can remember. There is definitely overlap, but it's not complete.

[26:45] Kasi Grosvenor: I would add that we often see that overlap occurring at the later stages, and it really underscores the importance of an earlier diagnosis before it has progressed to such a late stage. But lymphatic involvement — once the lymphatic system is truly involved, that is where you're going to start seeing lymphedema come into play. And we definitely see that lymphedema can occur at any stage. So you could be a stage 1 patient without obesity and still have lymphedema. It is not a direct progression in that way at all. [27:44] So properly diagnosing what the problem is and beginning treatments as early as possible is the best way to try to prevent that. And with patients who do have both conditions, so many of the therapies that are very beneficial for people with lymphedema also show a lot of positive benefit for people with lipedema. So having a proper CLT — a certified lymphedema therapist — on your care team is so important, because they are absolutely going to recognize either or both conditions and recommend the proper treatment.

[28:22] Dr. Linda Bluestein: Okay. I love that. And we'll definitely get more into treatment in the second half, because I'm sure people are dying to know what you do about this. Before we take the break, I do want to ask — and maybe Jesse, we'll have you start with this — what can you tell us about the current research showing the overlap between lipedema and connective tissue disorders like EDS and hypermobility spectrum disorders? It appears that there must be some shared biological or genetic pathway. What do we know about that?

[28:56] Jesse Cochrane: I think the most interesting thing right now in the lipedema space is that there's really a lot of emerging evidence around the extracellular matrix and the connections between cells that are impacted in a lot of patients. We see problems with some collagen processing proteins. We see problems with byproducts of the collagen processing — metalloproteases — things that are really impacting the way that the cells themselves interact. And I think that's similar to what's starting to be seen in some of these hypermobility spectrum disorders. The way that the tissue is embedded in this extracellular matrix is really starting to impact our understanding of the disease. [29:34] The other thing I would say is that the prevalence for both hypermobility disorders and lipedema is strongly skewed toward the female population. That really suggests that for both conditions there may be some sort of hormonal signaling pathway involved. And both of these conditions seem very complex, likely polygenic — we're not looking for single gene mutations. They do seem to have some genetic component because they appear to be inherited, but the underlying mechanism, at least for lipedema, is still being explored and trying to be understood.

[30:21] Dr. Linda Bluestein: And that's definitely true for hypermobile EDS and HSD as well. Exactly what you just said — most likely polygenic, with environmental influences. We haven't figured it out probably because it really is not that simple or straightforward. There are a lot of factors involved. There's now some fascinating research looking at proteins and differences in protein levels in people with hypermobile EDS and HSD versus comparison populations and looking at the immune system. I had Dr. Anne Maitland on the show recently and we talked about the epithelial barrier hypothesis — is it the assault on our epithelial barrier, and the mast cells releasing mediators that degrade connective tissue? It's all connected, most likely. The immune system. Yeah.

[30:23] Kasi Grosvenor: Yeah.

[31:15] Jesse Cochrane: Adipose in particular is like this incredibly complex tissue that has immune cells, vasculature, fat cells — it's all interconnected. It's very hard to pinpoint the exact cause or what is continuing the progression of the disease.

[31:32] Dr. Linda Bluestein: That's really interesting, because I don't consider myself an expert by any means on fat cells. So the fat cells do have an interaction with the immune system specifically?

[31:45] Jesse Cochrane: Yes. Your adipose tissue is composed of a bunch of different kinds of cells, including immune cells. That's one thing we're looking at with lipedema. There have been some reports about different kinds of macrophages — a specific kind of immune cell — that are present in lipedema tissue versus non-lipedema fat tissue. In fact, there's some thought that one of the drivers might be these different immune cells that are resident in the different kinds of fat tissue.

[32:19] Dr. Linda Bluestein: This is so interesting. We are going to take a quick break and when we come back, we are going to talk about Kasi's diagnostic journey — we're going to go into that a little bit. And we are also going to talk about, well, what can you do? Now we have this information and people might be thinking, oh my gosh, I wonder if this applies to me. What should I do about it? So we're going to take a quick break and we will be right back. [35:04] We are back and we are talking about lipedema today, and this is such an interesting conversation. And Kasi, I am so curious to know how your diagnostic journey went.

[35:14] Kasi Grosvenor: Oh goodness. Do you have all day?

[35:18] Dr. Linda Bluestein: Yeah.

[35:18] Kasi Grosvenor: So I do have lipedema. I was diagnosed at age 40, about 5 years ago. But the path to that diagnosis was very long. That path actually started — I think my first symptom was around age 3 when I fainted with no particular reason. This was back in the early '80s. There was really never any reason given for why this toddler just spontaneously passed out. And then that pattern continued, dramatically increasing throughout my entire childhood. For a lot of reasons, it simply was never diagnosed, but I was finally diagnosed first with POTS in my early 20s. And that was the first time we started to understand why I had this whole spectrum of things: constant dizziness, nausea, passing out all the time. That was kind of the first piece of the puzzle. [36:26] While I noticed from probably as young as I can remember that my legs were shaped differently from everyone else's, it was never something that I dwelled on. It was never something that I mentioned. So we continued throughout my 20s with a number of symptoms that were escalating across the board — allergic to everything, constantly being sick with nasal symptoms, eye symptoms, stomach symptoms. The fainting continued as the POTS and autonomic dysfunction continued. And that pattern just continued and progressed. I don't think there is a single body system that was not impacted by all of these things stacking up, and not one doctor recognized a pattern in any of this. [37:23] There's no way I could cover in this conversation as many conditions as I've had, but some of them included my vocal cords just stopping functioning properly. I started having extreme issues with speaking, with swallowing, things like that. They kept coming back to, "You're obese." It was one of the most frustrating paths to diagnosis I think I've ever experienced. [37:52] But the tide started turning in 2018, and I owe all of this to my oldest sister who shares all of these same conditions with me. She found an NIH trial that was looking at a mast cell activation disorder — specifically hereditary alpha tryptasemia. She and her family went through that first, and then they expanded the trial to pull in a number of other symptomatic family members, myself included. So in 2018, I received that research diagnosis of hereditary alpha tryptasemia. [38:31] The following year, my sister went to a mast cell disorder conference. And — while listeners on the podcast won't be able to see it — there was a pamphlet called "What is Lipedema?" sitting on the table at this conference. My sister picked that up and started looking at the pictures. She was like, "This is the legs of every woman in our family. What in the world? Why has no one ever seen this?" She brought that pamphlet home, talked to us about it. I would say for about a year I was in denial. I already had everything wrong with my body. People thought I was a hypochondriac. I didn't want this. I'm not dealing with it. So it took me about a year of denial. [39:21] And then I had a particularly traumatic rupture under my skin of bruising, and I was like, something's got to give. I have to get to the bottom of this. So I finally accepted her recommendation, I saw a certified lymphedema therapist, and she said, "Of course you have lipedema. Let's get you on the path to moving forward." [39:45] Fast forward just a little bit beyond that. After my diagnosis, the Lipedema Foundation was at a conference that I attended. Again, I didn't really know anything about the organization, but they had a live research event and the diagnosing clinician at that event was none other than Dr. Karen Herbst. When I went into the room to have my clinical exam, she was like, "Has anyone ever told you you're hypermobile?" And I said no. I actually said, "I'm stiff. I have a really hard time moving around." And when she told me to put my hands on the floor, in about two seconds my hands were flat on the floor without me even thinking about it. She said, "Yeah, I think you're hypermobile." [40:36] So the diagnoses have stacked over the years. Ironically, I have not been formally diagnosed with hypermobility to this day. I am awaiting formal diagnosis — I'm on a waitlist with UVA's Ehlers-Danlos Clinic, as it happens. But the signs and symptoms are all there. I understand that hypermobility is at play and it explains literally a lifetime of conditions across my entire body and answers so many questions. I would not have realized I had hypermobility until I got my lipedema diagnosis. [41:17] And I suspect for many of your listeners, they may already be carrying a hypermobility diagnosis or MCAS or POTS, and they might not even realize when they think about their bodies that there is yet another condition happening alongside all of this. So I'm hoping that if they recognize anything familiar about this, they will begin exploring it, because it is treatable. And I look forward to sharing what you do about this condition.

[41:46] Dr. Linda Bluestein: And it's so interesting because you mentioned that you've been diagnosed with hereditary alpha tryptasemia — an extra copy of the alpha tryptase gene, which is generally associated with higher tryptase levels. And that in and of itself creates a picture that looks like POTS, MCAS, and hypermobile EDS or HSD. I know there's a lot of discussion in the literature about whether you have all those different conditions, or whether alpha tryptasemia causes a phenotype that looks like that. And the other tricky thing, as I discussed with Dr. Anne Maitland recently, is that there are also people who have the extra copy but don't have this picture. So it's incomplete penetrance, as she was referring to it. I feel like we've learned so much, but at the same time there's so much we don't know. And it's so frustrating. [42:42] Like you said, it's not that you want to accumulate more labels, but you want to know what are the right things you should be doing in order to feel better. I'm curious to circle back, because I feel like somebody's going to ask about this. When you mentioned that you were diagnosed with POTS in your 20s, it sounds like you were continuing to have very poorly controlled POTS into your later 20s and early 30s. Were you not being treated for POTS?

[43:06] Kasi Grosvenor: Yes. I did start treatments that helped a lot with that. But ironically, it was once I started my conservative therapy for lipedema that my POTS symptoms improved dramatically, because I started wearing medical compression. And suddenly I was not having syncope episodes quite as often. Over time I've learned to understand my triggers. I've learned to recognize when it is coming on and I know exactly what to do to fix it. So I would say that over my 20s and 30s, I actually got tremendously better at managing my POTS symptoms. I am on several medications that manage it and keep it mediated. Thankfully these days I don't pass out quite as often as I used to. It does still happen from time to time. And my family — because so many of us share these conditions — recognize it very well. We recognize it in our children. We know what to do about it and we know how to manage it.

[44:13] Dr. Linda Bluestein: And I want to point out a very important thing for people who may or may not have listened to other episodes of the podcast. You don't have to faint in order to have POTS.

[44:25] Kasi Grosvenor: That's right.

[44:26] Dr. Linda Bluestein: Lots of people with POTS —

[44:28] Kasi Grosvenor: Pre-syncope events.

[44:30] Dr. Linda Bluestein: Yes. So if you're thinking, gosh, maybe I have POTS, or maybe you do or don't have a diagnosis — you don't have to faint in order to have POTS. A lot of people with POTS feel faint but they don't faint. So let's talk about treatment for lipedema. What are the most common treatment goals and approaches?

[44:49] Kasi Grosvenor: So first of all, the goals — there are a number of goals that we talk about specifically at Lipedema.org/treatments. Those goals are to reduce the inflammation on the body, to decrease the adipose tissue, to reduce that fibrosis which is where a lot of that pain is originating from, to improve lymphatic flow — which is helpful whether you have lymphedema or not — to prioritize mental and emotional health because that's a huge component, and then to promote overall health. Those are the main treatment goals. [45:29] When we talk about specific treatments on the website I just mentioned, we probably have about 60 to 65 treatments that we have either learned through research and literature or through patient self-reports to help manage the symptoms of lipedema. [45:49] For my personal journey — I was diagnosed 5 years ago — I have actually been able to reverse the stage of lipedema. When I was first diagnosed, I was between a stage 2 and 3 with significant functional capacity problems, and today I am between a stage 1 and 2 and lead a very full life. The treatments that have been the most beneficial for me in actually addressing the lipedema symptoms are, first of all, conservative therapy, of which I spend probably 1 to 2 hours every single day of my life. And when I say conservative therapy, I'm talking about wearing compression garments, using a pneumatic compression pump, and using exercise that supports my body without stressing my joints or causing more pain. For me, that's walking and swimming and doing low-impact stretching and things like that. I also changed the way that I eat to remove the majority of processed foods and sugars — essentially anti-inflammatory eating, trying to remove those triggers that would cause inflammation. Those are probably some of the biggest ones. [47:12] I am always very willing to mention that I do use GLP-1 medications. I have been on them since 2015, and after 11 years, I can say with certainty they have absolutely provided a lot of relief, but interestingly enough, they didn't for the first 6 years I was on them, because I had not been diagnosed with lipedema and I did not know how to treat it. Once I started layering in those therapies, the GLP-1 medications actually started benefiting my body. [47:47] And then finally — and I will not discount this — I have had 5 lipedema removal surgeries. That is a very personal choice for anybody with lipedema, and I would never recommend it until you have truly changed your lifestyle to incorporate the conservative therapies, the changes to your eating, and the changes to your exercise routines. Surgery should never be taken as the first step for lipedema. And it is also not a cure. It is a reset that provides you a little bit of relief. Lipedema does not currently have a cure. I hope that changes one day in my lifetime, but it does not have one today. So managing it is actually what you need to do to control those symptoms.

[48:36] Dr. Linda Bluestein: I really appreciate you sharing so much detail about your own personal story here, because that is very helpful. Can you go back just a little bit and explain more about when you were talking about a pump — a pneumatic pump?

[48:48] Kasi Grosvenor: Absolutely. A pneumatic compression pump is a device that you put your lower body into. The particular pump that I have actually comes right up to my rib line, and it uses sequential chambers of air, building up, and it helps push that lymphatic fluid. It helps particularly for people that have swelling — and not everyone with lipedema does have swelling, some do and some do not. I do, though it's relatively minor. That pumping action helps push lymph out of your lower body, where you typically have that swelling building up, so the lymphatic system can actually process that and get that waste out of your body. [49:34] That required a prescription by a certified lymphedema therapist in conjunction with my primary care doctor. It essentially replaces the need for a person to have to go to constant manual lymphatic drainage therapy. I didn't mention that when I listed the treatments earlier, but that is something that has been extremely beneficial and is for many people with lipedema. The pump brings that manual lymphatic drainage therapy into your home, which is particularly important for a patient whose mobility has already been severely impacted — their therapies can only be as helpful as they have the ability to carry them out. By having that lymphatic pump in my home, I'm able to do my therapy 7 days a week rather than taking time off work to go a couple of times a week to a hospital facility.

[50:37] Dr. Linda Bluestein: Yeah, having access to these kinds of things is a big challenge, because a lot of the people who really need the most help have the most difficulty accessing these things. So I appreciate you sharing all of that. [50:48] So Jesse, what about the evidence in terms of current treatment options? This is where I know it's tricky — anytime I give a talk about hypermobile EDS and HSD, I always have to include a disclaimer: all the treatments I'm going to talk about are off-label, because we literally have no approved treatment for EDS and HSD. What evidence is there for the things that were just mentioned, or the things that you think are most beneficial?

[51:20] Jesse Cochrane: One thing I will say is that, as Kasi mentioned, she's been using GLP-1 drugs, and we recently did a pretty large survey — about 2,700 people who have lipedema — asking them if they're using GLP-1s and if those drugs are helping them. And it does — I mean, it's a survey, so it's not a controlled trial, but it is 2,700 people. About two-thirds of them are using GLP-1 or GLP-1/GIP-1 drugs — so tirzepatide or semaglutide — and almost all of them are seeing symptomatic relief of their lipedema symptoms. We're seeing statistically significant improvements in mental health, physical health, and lipedema symptoms among this population. That is the one thing that is really encouraging — there does seem to be starting to be some pharmacological hints that we can treat some of the symptoms in a more holistic way, versus some of the other treatments that are really going after symptoms and not the underlying causes of the disease. [52:38] Otherwise, I'm not sure there's a lot of formal evidence. This is a funding issue. These are treatments that we hear from patients are working — the compression, the lymphatic drainage, the low-impact exercise. We have a lot of anecdotal evidence that these are super helpful and super important, but funding studies to actually interrogate them has been the big problem in the field.

[53:06] Kasi Grosvenor: And I would like to add — on the treatments page I referenced earlier, we do indicate where papers exist that talk about these treatments. And we also have a learning library called Legado where we essentially pull every published paper concerning anything to do with lipedema, so people can go explore for themselves. What I would say to any patient: you can go on social media and there are way too many quick fixes being advertised these days. That's not the way we need to approach this. We need evidence-based research showing that these things are working. [53:49] There are definitely some studies out there for things like pneumatic compression and wearing compression — not huge studies, but they exist, and where those studies exist, we try to note them. But again, so much of what we have listed as treatment options comes from patients telling us what is working and reducing their symptoms, and clinicians reporting on what they're seeing in their own patients. A lot more funding is needed to really investigate these benefits. But as a person living with lipedema and managing it very well, many of these treatments have been life-changing for me in restoring my mobility and quality of life.

[54:34] Dr. Linda Bluestein: And some people might argue with me about this, but when we talk about evidence-based medicine, to me all of that is evidence. It's just —

[54:44] Kasi Grosvenor: There's a difference.

[54:46] Dr. Linda Bluestein: Yeah. There's a difference between a double-blind randomized controlled trial versus a person trying something and saying that it works. We just have to factor that into consideration. And we also have to factor in: is this something that has a lot of risk, or is it something that is not very risky? Wearing compression garments — I don't know that I really want a ton of taxpayer dollars going to study that because it's such an easy thing for a lot of people to do. Obviously there's cost associated and I understand not everybody can do it. But we need to be mindful of the fact that all of this is information and it could all be useful. I learn so much from my patients. I hear them talking about something — "I tried this and it helped" — and I kind of look into it. If it seems safe enough, maybe I'll try it, maybe I'll offer it to another patient. We're just learning as we go. As Dr. Dacre Knight said at a recent conference, we're flying the plane as we're building it. That's what we're all doing. If I sat around and waited until we had double-blind randomized controlled trials before I prescribed anything to my patients, they would all be suffering. So I never thought I would do this, but I prescribe tirzepatide to a lot of my patients. And it's not necessarily that we're looking for weight loss — we might be looking for control of inflammation and other symptoms. So we're microdosing. And when I say microdosing, I mean really microdosing. I've had people message me saying, "I took 2 milligrams," and it's like, no — we start at like 0.2 or 0.35 milligrams often. Really microdosing. [56:33] Anyway, I think that's all super great information. And then I do want to just ask, Jesse, can you talk briefly about surgery for lipedema?

[56:44] Jesse Cochrane: There has been a recent study out of Germany, a multicenter study about surgery for lipedema specifically, and the results were encouraging enough that the German government is now covering lipedema surgeries for all stages of lipedema. It does seem to have lasting benefits for patients — they followed patients out, I think, 12 years from their lipedema surgeries, and those patients are still reporting improvements in pain levels, quality of life, and overall lipedema symptoms. [57:27] So surgery is — at the moment it has the most formal evidence behind it for lipedema treatment. But as Kasi said, it is again a personal decision. Unlike microdosing tirzepatide or wearing compression garments, it is risky. That is something to keep in mind as you consider your treatment options. People do report long-term benefits from lipedema removal surgeries.

[58:02] Kasi Grosvenor: And I think for listeners to understand — when we say lipedema removal surgery, what we are specifically speaking about is liposuction that targets the lipedema-affected areas. It is actual removal of that fibrotic, nodular, diseased tissue from the body. It is not a cosmetic procedure. And while some people do experience some cosmetic changes from it, it's not a pretty outcome, and that is something people have to be aware of. You're trying to remove the diseased fat — you're not trying to give somebody a new shape. The removal of that diseased fat is where the benefit comes in. But that's what we're talking about when we say lipedema removal surgery.

[58:50] Dr. Linda Bluestein: That's really important, so people don't think, "Oh, I'm going to come out of this looking like XYZ." Having realistic expectations is so important. [59:02] Before we wrap up, I want to talk about the Lipedema Foundation. But before we jump into that, I want to know from you, Jesse, where the research is today — if you happen to know anything promising coming up, or where you see the field evolving over the next 5 to 10 years?

[59:21] Jesse Cochrane: We're in an exciting time. We just, at the foundation, closed out a grant-giving period, so we're excited about the next 3 or 4 years of research that we're about to fund. We're really trying to understand some of the underlying mechanisms of lipedema. What are the genetic factors? What are the proteins that are overexpressed or underexpressed in these cells? What is the communication network within the adipose tissue? How are the fat cells talking to the immune cells? The goal is to really understand the triggers for lipedema, how the disease progresses, and the differences between, quote, healthy adipose tissue and the diseased adipose tissue that people with lipedema have. [1:00:04] And then the other thing we're really working on is diagnosis. I think this is sort of the key to a lot of it — really trying to see if we can find biomarkers, if we can diagnose lipedema from imaging data, and then move toward treatments and objective outcomes from treatments.

[1:00:29] Dr. Linda Bluestein: In terms of the Lipedema Foundation, Kasi, from a patient perspective, what should people know about the organization?

[1:00:37] Kasi Grosvenor: Oh, there are so many things. I will share very personally — I met the Lipedema Foundation as a result of my diagnosis. Their brochure is the reason I have a diagnosis today. I walked away from a 24-year career at a very well-known financial technology company. My background is in business and human resource management, but as soon as I realized the state of lipedema and its impact on my body and millions of other people — and I won't just say women; while it does primarily impact women, it impacts men as well — I was compelled to act. When I first found out I had lipedema, I explored probably every single page of the Lipedema Foundation's website to teach myself everything I could about it. And ultimately, my passion for learning about this led to me leaving that career to come work for the Lipedema Foundation. [1:01:43] So I cannot say enough about the resources they make available. I've already mentioned the brochure — our brochure is free for anyone who would like it. We will ship them to patients and we will ship them to clinicians. I heavily encourage patients to take those to their appointments, and I recommend that clinicians have them available in their office to provide when they see a patient they believe has this condition. We also do a lot to help clinicians understand lipedema. We offer free in-service opportunities to train clinicians on this. All you have to do is let us know on our website and we will schedule that. We have a professional learning manager who will set up that talk with your practice or with you as a clinician. We have a Clinician's Guide to Lipedema that I mentioned earlier, which essentially puts everything a clinician would need to know about how to recognize it, how to diagnose it, how to code it in a medical chart, what referrals make the most sense for patients. And all of our resources are available for free — available for download, and many of them we will also print and ship to you for free. [1:03:05] There are resources for patients, there are resources for clinicians, and then obviously, as Jesse has mentioned, primarily what we do is fund research. We are studying every component of lipedema because we want to achieve clear diagnosis and treatment options and give people better quality of life.

[1:03:27] Dr. Linda Bluestein: That's incredible. I had no idea that this organization existed before now. So, Jesse, what would you like to share about the Lipedema Foundation?

[1:03:36] Jesse Cochrane: On the research side, we're also building infrastructure for lipedema research. We've funded a biobank, so we're collecting patient samples to support larger studies to understand what's happening in the patient population. And then we're doing some of our own infrastructure-building projects, including a project — similar to what I think is going on in the hypermobility community — of trying to find blood-based biomarkers using proteins and protein expression to see if we can move toward a more objective diagnostic.

[1:04:10] Dr. Linda Bluestein: Wow. That's so exciting, and what a great organization. I'm so glad I got the chance to chat with both of you today. As you may know, we like to end every episode with a hypermobility hack. I don't know if you each have a hack or if one of you has a hack, but if you do, that would be great.

[1:04:27] Kasi Grosvenor: I do have a hack I would be happy to share. For so many conditions like lipedema and all of the hypermobility spectrum disorders, we rely heavily on aids to help us be comfortable. My hack may seem very simple, but it's very impactful to me. I wear a heated vest nearly everywhere I go. It's like wearing a heating pad, because often in these conditions your body hurts and you have a very difficult time with temperature regulation. Within lipedema, we often see that the lipedema tissue is colder than the surrounding tissue. There are big temperature variations. I think that is also something that is seen often in hypermobility disorders. So wearing a heated vest is like having your own personal heating pad. And sometimes you just want to look normal. You don't want to look like you're having to use all of these aids and devices just to maintain autonomic function on a daily basis. I could have probably shared 100 hacks, but that is one I use every single day of my life.

[1:05:41] Dr. Linda Bluestein: That's interesting. And I don't know where you live, but I would love to know — for people who just heard that and are thinking, "Great idea, I will definitely do that in the winter" — a lot of people of course are very heat intolerant also. So have you found anything that helps for cooling?

[1:05:58] Kasi Grosvenor: I have an ice roller that lives in my freezer, as well as a neoprene cap full of gel that I freeze, and I literally use both of those things, particularly when I get migraines, which are frequent. I tend to run cold 99.9% of the time, and then the other 0.1% of the time I am on fire. I live in Richmond, Virginia, on the East Coast, so I am almost always cold. And then when I do flip to that hot, the ice roller comes out. All of those things I mentioned are easily found on Amazon — they're just part of my daily existence for managing temperature fluctuations.

[1:06:45] Dr. Linda Bluestein: And we'll add all of those to the Bendy Bodies Amazon store. It's funny as you're saying this, because I was just traveling with my husband and his temperature comfort zone is like this and mine is like this — I'm hot, I'm cold, I'm hot, I'm cold. And he's just fine. Anyway, this has been such a great conversation and I really love chatting with both of you. [1:07:12] Before we go, could you just share — we'll start with Jesse — where can people learn more about you? And if you have any special projects or anything that you would like us to know about?

[1:07:20] Jesse Cochrane: You can find me on the Lipedema Foundation website, and I think my contact information is there. Feel free to reach out with any questions. We're really focused on getting people into the biobank. So if you are a clinician or a patient, reach out and we will try to coordinate with you to bring you in, collect your data, and have you be part of any future studies about lipedema.

[1:07:24] Kasi Grosvenor: Same as Jesse — Lipedema.org is the homepage for our organization. We are active on most social media channels: Facebook, Instagram, LinkedIn, TikTok. You'll find us in all of those places. And we do have a newsletter that I highly recommend, regardless of whether you are a patient, a clinician, a researcher, or a caregiver. We share all of the latest research that is coming out. We are very frequently developing new free resources, and every resource we have available is free — available for download, and many we will also print and ship to you for free. So those resources are so readily accessible, and we encourage you to follow our newsletter and website and social media channels and go get all of that great information.

[1:08:50] Dr. Linda Bluestein: We will definitely have that in the show notes, and you've said the website, so people will definitely be checking that out. So are you saying that if people want some brochures shipped to them, you guys will cover the shipping?

[1:09:01] Kasi Grosvenor: You got it. That's exactly what I'm saying.

[1:09:05] Dr. Linda Bluestein: Because shipping has gotten really expensive.

[1:09:09] Kasi Grosvenor: You can literally order several of our resources printed and shipped for free, including the Clinician's Guide. I will hold that up on the camera just for those watching.

[1:09:19] Dr. Linda Bluestein: People watching on YouTube — there are going to be people watching on YouTube.

[1:09:23] Kasi Grosvenor: But if you're just listening on the podcast, you will find that on our website. We do have an easy ordering form, and you just tell us how many you need and where you want those shipped, and we will happily do so. We would love to see them in every clinician's office, and we would love for patients to be uploading these resources in their patient portal and having these conversations with their doctors.

[1:09:47] Dr. Linda Bluestein: I feel like Lipedema.org might be having a conference in the future.

[1:09:52] Kasi Grosvenor: Well, we are absolutely thrilled to be coming to the Ehlers-Danlos Society Global Learning Conference later this July and talking about lipedema as a comorbidity that often runs alongside — so that's probably the next place that folks can check us out. June is Lipedema Awareness Month as well, so we will be very actively sharing quite a bit. And I know for Ehlers-Danlos your awareness month is in May, and we always tack on a little bit to that because there is so much overlap. So we look forward to all of our patient communities getting benefit from information over the next several months.

[1:10:34] Dr. Linda Bluestein: Yes, most definitely. And I look forward to meeting — will both of you be at the Global Learning Conference in Dallas? Because I will be there.

[1:10:41] Kasi Grosvenor: I will be there.

[1:10:43] Dr. Linda Bluestein: Okay, great. I will be presenting — I'm doing a presentation on mast cell activation syndrome on Friday night, and then I'm doing a workshop on pain on Saturday.

[1:10:54] Kasi Grosvenor: I will plan to be at both of those.

[1:10:56] Dr. Linda Bluestein: Okay, fantastic. Thank you so much. It was great chatting with both of you. Thank you for taking the time to come on the Bendy Bodies Podcast and share your stories and your expertise.

[1:11:09] Kasi Grosvenor: It was such a pleasure.

[1:11:15] Jesse Cochrane: Thank you so much for having us, Dr. Bluestein. It was great to meet you.

Dr. Linda Bluestein: Thank you so much for listening to this week's episode of the Bendy Bodies Podcast. If you'd like to go deeper, I share additional education, clinical insights, and resources in my newsletter, the Bendy Bulletin, which you can find on Substack at hypermobilitymd.substack.com. [1:11:26] You can also help us spread the word about connective tissue disorders by leaving a review, sharing this episode, or sending it to someone who needs it. These small actions truly make a difference in raising awareness about conditions that are still widely misunderstood. And don't forget, full video episodes are available every week on YouTube at Bendy Bodies Podcast. [1:11:49] As many of you know, I offer one-on-one coaching and mentorship for both individuals living with connective tissue disorders and people caring for them. You can learn more about these options on the services page at hypermobilitymd.com. You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, X, and LinkedIn, all at hypermobilitymd. [1:12:06] As part of our collaboration with the UVA Ehlers-Danlos Syndrome Center, we also want to share some of their helpful resources. For questions or appointment inquiries, you can contact the UVA EDS Center at [email protected]. Again, that's the letter R as in Robert, [email protected]. You can find answers to common questions at uvahealth.com/support/eds/FAQ. [1:12:36] Our incredible production team is Human Content. You can find them on TikTok and Instagram @humancontentpods. As you know, we love bringing on guests with unique perspectives to share. However, these unscripted discussions do not necessarily reflect the views or opinions held by me or the Bendy Bodies team. Although we may share healthcare perspectives on the podcast, no statements made on Bendy Bodies should be considered medical advice. Please always consult a qualified healthcare provider regarding your own care. For more information about the Bendy Bodies program disclaimer and ethics policy, submission verification and licensing terms, HIPAA release terms, or to get in touch with us, please visit bendybodiespodcast.com. The Bendy Bodies Podcast is a Human Content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast. [1:13:13] Human Content.