Dr. Susan Peirce Thompson:
Hey there. It's Dr. Susan Peirce Thompson and today we're talking with Emma Cloney who is the current president of Lipedema Canada and one of the co-founders of that body. And this is a follow-up vlog. So if you remember, just a few weeks ago I did a vlog on lipedema and I said, "I don't know everything about lipedema. I know a tiny, tiny, tiny bit, but submit your questions and I will get an expert on to answer them." So Emma is our expert here. Welcome Emma. Thank you for being here.
Emma Cloney:
Thank you so much for having me.
Dr. Susan Peirce Thompson:
Yeah. So tell us how you got interested in lipedema and how you find yourself to be the president of Lipedema Canada. How did that come about?
Emma Cloney:
Well, it's kind of an assorted tale. So I am by trade a women's health nurse and I was working in the field of obstetrics back in 2020 and 2021 when I experienced an injury at work, standard stuff, caught a patient falling off an OR table. But following that, immediately I had this disproportionate increase of symptoms that didn't make a lot of sense. I had so much pain when I stood that I felt like I was standing on broken bones. I was having all kinds of symptoms that just didn't have a rational medical explanation. And as my care team pursued into it further, we weren't coming up with answers. And the long and the short of it is that one search about painful legs led me to a picture that looked like it was exactly my body and so much so that I panicked when I saw it and though, oh my, that is my body.
The short version is it led me to understand that there is no training currently in any Canadian medical school for doctors on the topic of lipedema. And that also meant that there was no care, which started a knowledge journey and advocacy journey and a need for emergent care overseas. And so overnight, the trajectory of my career changed very significantly through my own journey as a patient. And then as I navigated that, a knowledge that as a nurse, it's not okay for patients to have to be this responsible for their own healthcare. And there was a need to create a national association and start fixing some of those problems. And so myself and 11 others co-founded Lipedema Canada. And now today, five plus years later, I sit in front of you as the president of that association and one of the most knowledgeable people in the country on this subject, not for sure the only, but one of.
Dr. Susan Peirce Thompson:
Wow. Well, that's incredible and impressive and tragic also. And do you have any sense of how much that may or may not be true of the United States as well, that there's no training for doctors on lipedema? Do you have any idea?
Emma Cloney:
So the U.S. has a slightly better situation than Canada in that there are some physicians who are very knowledgeable about lipedema there. And I can't speak directly to whether or not it's a standard inclusion in all of your medical school curriculum because that isn't specifically my area of expertise in the U.S.. But I do know that from speaking with our experts in the U.S. and our colleagues, that there's still a significant portion of the clinical population that doesn't really know what lipedema is. If they have heard of it, they often confuse it for other conditions that sound similar like lymphedema or have information that maybe isn't scientifically backed when they're trying to help their patients. And so patients around the world experience difficulty trying to access knowledgeable providers for lipedema. And that's a huge issue and why there are so many patient associations who are all very much on the same track as Lipedema Canada trying to resolve these issues.
Dr. Susan Peirce Thompson:
Yeah. Well, I relate to what you said about you are experiencing symptoms that did not add up. They just had no explanation because when I heard about lipedema for the first time that really sunk in, which was just a month or two ago, what happened for me is the light bulb went on that this is probably potentially an answer or maybe the answer to scores, maybe hundreds of cases that I've experienced and come across through Bright Line Eating of people who are doing all the right things and they're not losing weight. It's felt like I'm a math teacher and I've got a classroom full of students and they've all got calculators that were ordered at the same time and came out of the same box. And I'm saying, now put seven times five. And most of the class is coming up with 35 and feeling very proud and some people are coming up with 12 or 13 or six.
And I'm like, how is this happening? What is going on? I'm giving you the same guidance and you're telling me that you're 312 pounds and you've been following this food plan exactly and you have lost zero pounds in a month. Most people at 312 pounds on this food plan lose 30 pounds in the first month, mostly water, but still. And I would look at them and I'm thinking, don't accuse them of lying, but this doesn't make any sense. And now that I understand that lipedema is a thing, it feels like, okay, there might actually be a clear medical answer here.
Emma Cloney:
You nailed it. And from a clinical perspective, that's an experience we hear about lots. We also hear the rebutal in clinicians who maybe don't even realize they're interacting with lipedema patients. When we try to engage with them, sometimes they say, oh, but I don't treat lipedema in my practice. Let's be clear. Yes, you do. You just may not know you do. You can't have a condition that's as common as lipedema, estimated to be one in nine individuals assigned female at birth. So that's as prevalent as breast cancer. That means if you know 20 people, at least two of them have lipedema. It runs in families. So you might know even more. And it's comorbid with a bunch of other things. And so especially if you work in nutrition and dietetics like you do, you're going to interact with people who've said, I've tried everything. Nothing I do affects my body.
And yes, that inclination to question, well, if one plus one equals two and you're not coming up with two, then are you lying?
Dr. Susan Peirce Thompson:
From
Emma Cloney:
The patient side, the lived experience is that we know that all the health advice that we get fits that box and we don't fit in that box. The box doesn't apply to us. And it is so maddening and it often leads patients to blame themselves because they can't see any other reason why it wouldn't be working.
Dr. Susan Peirce Thompson:
And this
Emma Cloney:
Is where good education has to start.
Dr. Susan Peirce Thompson:
Beautiful. All right. Well, I've got eight questions here and they're good ones. People sent in the questions for Bright Line Eating. So let's just start right from the beginning. How is lipedema diagnosed and how can someone who's listening tell if they might have it? And you mentioned other conditions like lymphedema. So how is it distinguished from cellulite lymphedema or other causes of disproportionate fat or swelling?
Emma Cloney:
So you're asking me what is lipedema? How do we figure out what it is? Let's start with exactly what it is. All right, so lipedema is a chronic condition that is known as abnormal accumulations of fat usually in the lower body, so specifically the legs and sometimes the arms, but it spares the hands and feet. So what do I mean by that? When you look at the body, you will see large amounts of fat accumulating from sometimes just from the waist down to the knees and in other patients all the way down to the ankles, but it mysteriously stops and the feet look totally normal. And the same is often true of the hands. That by itself is our first clue that this might not be lymphedema and it's probably not obesity.
So it results in a really disproportionate body shape. Sometimes people almost feel like they live in two bodies. You can have a really small torso of super small waist and disproportionately large hips and thighs and arms. And sometimes it's even called two body syndrome. This leads of course to significant physical discomfort and emotional distress. And lipedema, as I mentioned, is chronically misdiagnosed and mistaken for obesity or lymphedema. The problem with lymphedema is that there is some overlap in some of the treatments. Even the name is so similar. And when you look at a person who lives in the larger body, we've been sort of trained to just think obesity at first call, and that is not always the case. And in the case of lipedema, that is not always the case.
Okay, so you want to know what lipedema is. Let's talk about the basics. In order to have lipedema, you must have bilateral, which means both sides of your body, symmetrical, which means approximately even between both legs if they're affected in both arms. Disproportionate, meaning it doesn't match with you. Accumulation of fat on the legs and the arms that spares the hands and feet. Here's a really important one. Lipedema fat is painful. It's painful when it is touched. It's painful when it's pinched. Lots of patients actually don't even realize that they have painful fat. And that's because you're born with lipedema, even if it isn't expressed yet. So
If you have said yes to any of the following things, it hurts when a pet walks across your lap. It hurts when you have your blood pressure monitored. It hurts if somebody pinches you or pokes you even lightly. If you experience these sorts of things, including difficulty and pain when you're standing or trying to walk, decreased walking tolerance, those are signs of pain in your fat tie. And very directly, if you get massages or pedicures, we hear about this one a lot, and you're basically climbing out of the chair and they're saying, "I'm barely touching you. " I want you to start thinking about lipedema. All right, the onset of lipedema, you are born with the genetics for it, but when does it show up? Usually it's at times of hormonal change. So puberty, pregnancy, menopause, sometimes the start of hormonal birth control. Why is this relevant?
Well, with other illnesses such as lymphedema, you could be born with that. It could show up right away. But a lot of our patients will say things like, "I was a skinny kid. There was no sign that anything was wrong and I hit puberty and my body just started changing completely outside my control." I want you to start thinking lipedema again. This is what you talked about. Difficulty losing weight in the affected areas. So almost every lipedema patient we have surveyed or interacted with will tell you the same thing. They have tried every diet on the free planet. They've tried low carb, they've tried keto, they've tried calorie restriction, they've tried working out to the 19th degree. And do they lose some weight? Maybe. Yes, sometimes. But they don't necessarily lose the weight in their legs or in their arms. They might end up almost looking even more disproportionate because they're now so thin in other places and it just doesn't match.
It doesn't match with what their peers are seeing for weight loss. Easy bruising. These are people who are going to say, oh, I bruise like a peach. Bruises of unknown origin. I have no idea what happened. And these big bruises are on their body. And lipedema impacts your mobility and not just in the way you're thinking. Lots of people might think, oh, well, if you live in a much larger body and your legs are really affected, yeah, of course you have a hard time walking. No. People who live in a body with a BMI of 22 and have lipedema may still have difficulty with standing, walking tolerance, getting exhausted, physically exhausted in their legs just from going up a flight of stairs. This impacts your mobility because it's part of the condition.
Here's an example of what some lipedema bodies can look like. Again, there's a really disproportionate idea that all lipedema patients look like the woman on the person on the end, on the largest of our people. It'd be very hard to tell, is that lipedema? Is that lymphedema? Is that obesity? But pay attention that on the other end of the spectrum, like I said, you can have people who are a size two, who are young, who are teenagers even, who certainly have lipedema. And once we start to look at how do we recognize lipedema, it gets a lot less mysterious regardless of body size.
Dr. Susan Peirce Thompson:
Yeah. I just want to highlight something you said about the bilateral and symmetrical, because isn't that a good way to distinguish lipedema from lymphedema?
Emma Cloney:
Yes. It's one of the important ways to distinguish it. Okay, so who gets liphedema? Well, it affects predominantly women, those assigned female at birth. So that's the majority. There is a small subset of the population where men might have it, and it's estimated that of the people that are known to have lipedema, about 3% might be assigned male at birth. So like I said before, that's one in nine. This is not rare. Not rare at all.
Dr. Susan Peirce Thompson:
Unreal.
Emma Cloney:
In Canada, so we know nationally, internationally, globally, it's accepted that approximately an estimated 11% of the population will have lipedema. Wow. So based on our numbers in Canada, that's 2.2 million Canadians. And from our colleagues at the American Lipedema Association, they identify that in the U.S. that's approximately 17.4 million Americans. Not a small number. Okay. So people are going, "Oh, okay. Well, what causes it? Did you eat your way into lipedema? What did I do to cause this? Let's go through it. " The exact cause of lipedema is not fully and completely known yet. So that's important to say anytime we know something about a condition, there's always some unanswered questions. And in this case, there's still lots of ongoing research to get all of the details, but here is what we do know. Lipedema is genetic. It is believed to run in families indicating that there is a genetic predisposition to it.
But here's where it gets interesting. It's not just on your mom's side or on your dad's side, and it doesn't always happen to every family member along the way, which can make it even harder to track. It is inherited on your X chromosome and you have an XX as a female and an XY as a male. And that means that it could definitely be your dad's fault. I'm just saying.
Dad's fault. It could be dad's fault too. Don't just tell your mom. And then like I mentioned before, what triggers it? Okay. Hormonal factors are believed to be a significant trigger for lipedema. In fact, we see the onset almost 80% of lipedema patients will have their onset in puberty. It doesn't mean that they'll go all the way from looking like a normal adolescent to looking like the largest person that we showed in the pictures before. But you're very likely to have that onset of symptoms at times of hormonal change. And so those hormonal changes could be puberty. It could be the start of birth control. Hormonal birth control specifically. Pregnancy of course can trigger and/or worsen symptoms. Menopause and perimenopause the same. Also, stress. Stress, a surgery, a trauma, traumatic life events, all of these things affect our hormones and can affect the onset of lipedema.
So remember I told you it was linked with a lot of things?
Lipedema is a connective tie disorder. So what is your connective tissue? Well, it's everything. It's everything in your body. It is your skin, your blood, your lymph, your fascia, your organs, cartilage, tendons, ligaments, and fat. So if you have something wrong with your fat tissue on a structural level, a collagen problem, then it's very probable that you might have some of these other things. Here's a list of just a short list. This is not a comprehensive list of the comorbidities, which means diseases and conditions that might live alongside a person with lipedema. So obesity does commonly occur with lipedema patients, but they are two completely separate conditions. They may have an impact on each other, but obesity does not cause lipedema, but it does coexist in people with lipedema. Hypermobile Ehlers-Danlos syndrome or hypermobile spectrum disorder, very, very common in the lipedema population. POTS, which is postural orthostatic tachycardia syndrome, which is linked also to mast cell activation syndrome.
This is problems with allergies and disproportionate reactions to medications and sometimes really significant food allergies and issues. Allergies is a common, definitely linked to this population. ADHD and neurodivergence. Migraines, hypothyroidism, gut issues, an incredibly high incidence of anxiety and depression in the lipedema population well above what is average in the general population. Sleep disorders, high blood pressure, arthritis and anxiety. Do you notice anything that's really missing from this list? As a clinician, does anything sort of spark your attention?
Dr. Susan Peirce Thompson:
Cancer, heart disease.
Emma Cloney:
Yeah. What else don't we see? We think about people who are -
Dr. Susan Peirce Thompson:
Addiction. Yeah.
Emma Cloney:
Who are obese, classically obese. We often pair metabolic disease with that. So we're talking about things like diabetes. Diabetes, if you look on this chart here at the bottom, our prevalence of lipedema and people who have type two diabetes is incredibly low. And type one diabetes, nil. So if this was just obesity, then those numbers would not track this way, right?
Dr. Susan Peirce Thompson:
Right. Yeah. It says diabetes 4.7%, diabetes type one, zero.
Emma Cloney:
Exactly. So again, as clinicians, I know it's hard to sort out, but we cannot just look at a person in a larger body and immediately assume that they must have metabolic disease because they are larger. We have to go further than that. We need to look at the whole picture. Remember I mentioned the hypermobility? Well, it's estimated about 50% of our population might be hypermobile. And so the images here will show you what does hypermobility look like when it's assessed in a lipedema patient? We're talking about people who might be very large who are still able to completely touch the floor with their hands without bending their knees, whose arms can bend behind them, whose fingers can contort into different shapes. And you don't have to have everyone - Yeah, like double
Dr. Susan Peirce Thompson:
Jointed. Yeah.
Emma Cloney:
Yeah, that's a term that we often hear. And if you were one of those kids who used to perform party tricks,
The cool ways you could be bendy. And even as you got larger, you were still really bendy. I want you to start thinking there might be a connection here. And then not to be discounted. Like I mentioned, the prevalence of anxiety and depression in the lipedema population is incredibly high. And that has been marked from the consensus documents and guidelines and research around the world that it's not that patients are mentally ill because they have lipedema. It's often that the anxiety and depression is linked to the impact of having a disease that is misunderstood, what causes you to live in chronic pain, that is very hard to find care or supports. It's incredibly isolating. Being perceived every time you go out of the house, having people stare at your legs and your arms and feeling like you did something to earn that can be incredibly isolating.
The reduced mobility often leads to disability, the social isolation that I mentioned. And then there are enormous financial barriers for patients with lipedema. So giving you a whole perspective of what it might look like for a patient.
Dr. Susan Peirce Thompson:
Yeah. So this is our first question. How is lipedema diagnosed? How could you tell if you might have it? So yeah, let's totally cover this slide. Absolutely.
Emma Cloney:
All right, so how is a diagnosis made? Well, you're going to go and try and find yourself a knowledgeable clinician who is confident with making a lipedema diagnosis. The reason for that is that the diagnosis is made through a clinical evaluation, through a thorough look through your medical history and a complete physical exam by a healthcare professional who is knowledgeable with lipedema and that is essential. At this time, there is no objective test. We cannot test your blood or your urine or scan you. We can use imaging to rule other conditions out, which sometimes helps rule lipedema in. But there is not a definitive test that you can receive in order to say that's lipedema. That's one of the areas that we as a population, I know there's a lot of research ongoing trying to find one, and that is one of those things that has to come along.
So in the meantime, right now you have to find a clinician who is knowledgeable enough to be able to sort these things out through a proper history and physical exam.
So if you're a clinician or you're a patient, you're wondering, okay, well, I have some of these things, maybe I don't have others. Here is the diagnostic criteria. You have to have these things in order to receive a lipedema diagnosis. First, you have to have a relevant history. So that your onset of symptoms happened at a hormonal change, puberty, pregnancy, menopause. That part has to track. A family history of a similar body type. This is one of the reasons it's not just about how you look. They want to know about your grandmothers, your sisters, your aunts, daughters, cousins, and any other relatives that might've been asigned female at birth. Do you see in the family photo that everybody had grandma's legs?
Are your symptoms worse in the summer or with prolonged standing? So this is asking more about the mobility impacts. Do you have a hard time with long walks? Are you unable to really stand for long periods of time standing still? Do you feel a heaviness in your legs and a discomfort or a creepy crawly feeling as the day goes on? And is it worse in the summer? Not specifically swelling necessarily, but symptoms just feeling worse. And really importantly, that patients report difficulty losing weight. These are the things we ask as part of a subjective history. So these are questions to the patient. Next, it's what are the physical criteria that have to exist in order to have a limpedema diagnosis? So back to that, you must have bilateral symmetrical fatty enlargement of the limbs. So that's the legs and the arms that spares the hands and feet.
So this requires anything that's on the physical side requires that clinician to look at you really carefully, assess you from head to toe and really look to see, do you have these things?
Dr. Susan Peirce Thompson:
And it could be just the legs, not the arms. It could be just the legs above the knees and not the lower legs. There's different patterns of how it can show up in the body, right?
Emma Cloney:
There is. And those are called types. So lipedema almost always exists at least in the legs to some proportion, even if it's just around the hips and buttocks and then it stops. To my knowledge, I don't know of reported cases where it has only been reported just in the arms with no leg involvement whatsoever. The literature seems to point that arm involvement seems to be almost like the secondary part of lipedema progression, which can still happen early on in someone's journey with lipedema. And in a minute, I'll show you some pictures actually that show you the types and that way you can understand it with a graphic we made. Back to the pain, you have to have pain and tenderness on pressure to the affected areas. So it's important to note that if you've lived with pain your whole life, you don't know that not everybody else feels
That pain. And so lots of patients will say, "Oh, I don't have pain. No, no, that's fine. I don't." But when you pinch under the arm or you pinch deeply behind the calf and they're recoiling from you or they say, "Oh yeah, no, it definitely hurts when my kids used to jump on my lap or when my cat steps on me, I'm trying to be nice about it, but it hurts so bad." These are signs that you have pain and the average person who doesn't have lipedema is not going to tell you that those things hurt.
Do you have easy bruising, bruises of unknown origin? This'll happen all the way through to childhood. It's related to vascular fragility. And then that persistent limb enlargement after weight loss. We've had patients who have had bariatric surgery and they've lost hundreds of pounds. And yet when you look at their photos, the top half of their body, there is not an ounce of fat left on them for them to lose. And the lower half of their body, if you were to look at them completely separately, you would never assume that those two halves go together. This specific one, this is called the stemmer sign, and this'll be negative. This is what we're looking for to determine, do you have lymphedema or some type of pitting edema in the feet or don't you? In lipedema, like I said, it's going to spare the hands and feet. So you'll have what's called a negative stemmer sign.
If you have a positive stemmer sign, meaning that there is swelling in the feet and the toes, it doesn't necessarily mean you don't have lipedema, but it might mean that you have lipedema and possibly lymphedema and some type of vascular disease. So this is where that clinician who knows a lot about lipedema has to come into play because it's not a straightforward line. But if we're talking only about pure lipedema with no comorbidities, we're going to be looking for a negative stemmer sign. And then have you heard from your doctor that your lab tests were normal? All my lab results are great. Sometimes they even say it kind of shocked. So they look at you, you talked about a patient who was 312 pounds. When that patient's blood pressure comes back normal and their lab values come back normal and they don't have diabetes and the clinician is stumped because you're expecting there should have been some kind of metabolic disease, there should have been something wrong and instead these numbers are great, but your patient is over 300 pounds.
Start paying attention because where the fat lives on a lipedema body is thought to be protective.
Dr. Susan Peirce Thompson:
Really
Emma Cloney:
Interesting mechanism.
Dr. Susan Peirce Thompson:
Emma, that's all so interesting. So thank you for that education. And I want to go into our second set of questions here, which has to do with weight loss because Bright Line Eating is a weight loss program that is geared more toward people who have a brain that's highly susceptible to the pool of addictive foods. So these are people who it's not going to work for them to have one serving of ice cream, they're going to finish the pint on average. And so we abstain from sugar typically we abstain from flour, things like that. How does lipedema affect weight loss? You've already mentioned that it makes it hard to lose weight in the affected area. So what does that say about goal weight maintenance, goal weight setting, expectations for body composition changes when following a really healthy way of eating like Bright Line Eating? We eat whole real foods, tons of vegetables, lots of real fresh fruit, whole grains, things like that, good healthy protein sources.
What should people be expecting if they have lipedema?
Emma Cloney:
These are phenomenal questions and super common questions. So let's break it down into a couple of things. First, we have to have different expectations about what is the outcome goal of a nutrition and way of eating plan for a person with lipedema. So things that we know for sure. It might be very difficult for you to lose substantive amounts of weight. The numbers might not move quickly or at the same trajectory that your peers might have. And the places where you might lose weight are likely not going to be in the legs specifically and the arms. Now that's not to say that if you had obesity and lipedema, which can happen, that you won't be able to lose some weight. In fact, you might be able to lose a lot of it, but we have to set realistic expectations around the fact that you are not going to be able to lose lipedema fat cells from this.
You cannot change your genetics much in the way that you cannot wish your eyes were green if they are brown. We can do things to make our lipedema better, improve our symptoms. And it is always worth engaging in healthy ways of eating because there are so many other benefits that have nothing to do with a scale and they have so much to do with quality of life and longevity. Specific to lipedema, you mentioned some things that are really important Important. Lipedema is known to be an inflammatory condition and so it can be made significantly better. The symptoms of it, which is pain, heavy legs, fatigue, all of those things can be made significantly better by reducing inflammatory foods, things like sugars, simple carbohydrates. Nightshades is a really important one. I heard you mention a lot of
Dr. Susan Peirce Thompson:
Vegetables.
Emma Cloney:
There's lots and lots and lots of really great vegetables that grow out of the ground that might not be great for every lipedema patient. Know that approximately 66% of the lipedema population has a subclinical diagnosis for celiac disease. So it's one of those things where a lot of us don't even know where the pain in our body is coming from and we start to find out once you get one diagnosis, then there's these collateral
Diagnoses. So from a way of eating perspective, from a body composition change, you can expect that if you eat good protein and a lot of it, that you might feel stronger, you might look more toned. Also important to note there is decreased muscle tone and difficulty bulking up in like that. You really want the delts or something like that for lipedema patients. You might also be incredibly strong and have the best muscles underneath your legs, but that fat tissue and the way that it sits, you're just not seeing the results, but that does mean that you're not getting stronger. Does that answer those questions?
Dr. Susan Peirce Thompson:
It does. I mean, I'm just going to put numbers on it. Do you have any idea of how many extra pounds someone with lipedema, I guess it depends on how much lipedema fat they have on their body because people are in Bright Line Eating, they're thinking, okay, I'm five five. I'm trying to get down to whatever range. How much do I need to add if I've got lipedema fat on my legs? Any idea?
Emma Cloney:
No. So that's too hard of a question to answer for a couple of reasons. First off, everybody's body composition is so different. But what you can say is that if you're the kind of person, or even as a clinician, you look at a person and you can have sort of a rough idea what you think they might weigh or what their BMI might be. Now we're going to talk about BMI in a second. But if that person gets on the scale and they weigh significantly more than they look like they do, that is an indicator you might want to start thinking about lipedema because -
Dr. Susan Peirce Thompson:
Oh, it's denser or something? Yeah.
Emma Cloney:
It will weigh in much heavier than we look. And so there's a density to that tissue. It is a heavy fibrotic tissue that's fraught with leaky capillaries and it's heavy.
Dr. Susan Peirce Thompson:
Interesting. So I've always said that if you're pear shaped, if you're bottom heavy, we're going to add quite a bit of weight to your goal weight range. And it's interesting because I've noticed that over the years that women who are bottom heavy often weigh a lot more and are in their target final bright body range. And I wonder, I mean, given how common it is and prevalent it is, I wonder what percent of that sort of sense, spidey sense that I've picked up over the years, because it's not a measurement, it's just a sense that I've gotten actually comes from people with lipedemia being in that category, right? Yeah. So interesting.
Emma Cloney:
I think it's really, really important. If there was any advice that I could give to any clinician advising a lipedema patient on trying to change their body, it would be, I think we should be less concerned about numbers on scales and we need to find different metrics to measure what does success in this area feel like and look like for you? Does it look like you feed your body nutritively? Does it look like you have more energy? Does it look like you see changes maybe even on your tape measure and you know you're fitting into a different size of pants or you can make it 10 times further down the block? I'm going to switch hats and speak from personal experience. In my lifetime as a lipedema patient, I started off as a ballet dancer, as an equine rider, as a swimmer. I was 82 pounds and five foot nine the week before I hit puberty.
Dr. Susan Peirce Thompson:
What?
Emma Cloney:
And not because I was starved, but because I was just built like that. And I had no issues with eating at all until I hit puberty and my body just started changing. I didn't change what I was eating. I didn't change how much I was exercising and my body changed. And by the time I graduated high school, just a few years later, I crossed the stage at 290 pounds. I steadily gained 20 pounds or more a year from my lipedema with no change to how I was eating or working out.
Dr. Susan Peirce Thompson:
That must've been so hard on you psychologically. Oh my gosh. It was
Emma Cloney:
Terrible. It was terrible. And everything I tried, I tried. I was a child of the '80s, which meant I grew up in the late '90s and early 2000s and that was skinny culture at its tops.
Every Weight Watchers meeting that my mom went to, I got dragged to. And in my lifetime, I have lost over a hundred pounds at a time four times, four times. That's a whole very plus-sized human being that's two full-grown men. And it was not sustainable. And reasons why it wasn't is because when you have the goal of hitting some particular number and your only goal is focused on how can I reduce? How can I starve myself? How can I withhold? How can I work out longer and harder? That is not sustainable. And if we choose non-sustainable ways to try to reduce our body, then the rebound effect of when we do start to gain it back, and you will, if you're doing it unsustainably, if your goals are based on a metric you couldn't reach, that box we talked about, then there's going to be a rebound.
And think of future you. It gets harder and harder and harder to lose that weight the next time. And the gaining of weight can significantly worsen your disease progression. And so it's not just about a beauty standard. We have to approach this as disease management and from a place of knowledge and being gentle with ourselves because the, I want to be a size two is not necessarily the appropriate metric.
Dr. Susan Peirce Thompson:
So you've spoken about this a little bit that nutrition plays a role in lipedema management and that eating better is going to play a role. You mentioned celiac disease. We don't eat flour in Bright Line Eating, but we can eat wheat, so we can eat gluten if it's in its whole form, but sounds like you might recommend not eating gluten if you have lipedema. And what does the current evidence say about low carb, ketogenic, carnivore, anti-inflammatory, other dietary approaches? In Bright Line Eating, we do no sugar, no flour and weight and measured meals, lots of fruits, vegetables. You said no nightshades, no gluten. Keep going.
Emma Cloney:
So I want to be real clear that there's no hard and fast nose for any one specific person. There is an incredibly high prevalence of disordered eating and lipedema and not the kinds you're thinking of. Restricted, over-concerned about eating too much, leaning towards anorexia and bulimia. And these are things that we need to be really conscious of. If a person has had a really rough relationship with food, we don't want to put the word no into it. But from the scientific recommendation standpoint, it is recommended to engage in whole foods and anti-inflammatory ways of eating. So that might be plans that if they work for you, things like Mediterranean diet or ketogenic for some. There's something called the rare adipose diet that is actually from a doctor in the States that you can look up. Dr. Karen Herbst has lots of information about the rare adipose diet.
And the most important things around all dietary interventions are that they're sustainable for you and that they're tailored to the patient, to the person. Because where some of us might be able to eat gluten and feel okay, others of us, we didn't even know that we have celiacs and everything we ingest that has gluten in it until we know we continue to have inflammation and pain and no weight loss for that reason. And then all sorts of other really scary stuff, gut issues, et cetera.
It's important to actually also collaborate with other care teams. Let's find out if that person has celiacs. Do they test positive on the blood test? Do they want to try out a celiac diet and what improvements can they diary that make difference to their life? So much of figuring out your lipedema is a trial and error, paying attention to the signals in your body process. I'm sorry that that's not as like, yes, do this and no, do that, but it's like everything in healthcare, it is balanced to the patient and person.
Dr. Susan Peirce Thompson:
Yeah, no, absolutely. That's great. Okay, so let's talk about the treatment options that exist for lipedema, including surgical ones and then more conservative ones. What are the treatment options?
Emma Cloney:
Yeah, that's a great question. So lipedema management always includes conservative management. So conservative management for lipedema, we've talked about some of that. That can be ways of eating, eating an anti-inflammatory diet, or paying more attention to the nutrition that we put in, including sometimes eating more if we're actually really restricting ourselves. Engaging in mental health supports, a physical exercise plan that has to be tailored to the patient's abilities. One of the things that's top recommended is the pool. Get in the water. It by itself has a natural compression when we stand in the water or swim, but if all you can manage is to stand in a shallow pool and just water walk back and forth, the hydrostatic pressure of that water is going to move the fluid up and get your lymphatic system going. We talk about compression because a part of your life as a patient with lipedema is going to probably be wearing compression garments, medical grade compression garments that are often going to need to be custom measured for you by a qualified fitter.
And those are going to be something that you wear to tolerance 12 to 16 hours a day for the rest of your life.
Dr. Susan Peirce Thompson:
Wow.
Emma Cloney:
Now it's not going to cure your lipedema. Nothing we do for lipedema is curative. Everything is a treatment. Everything is management. So those compression garments are not going to reduce the fat in your legs, but they will decrease your symptoms, help you feel more supported, take away some of that feeling of heaviness. And one of the super benefits, especially for myself as a nurse on my feet 12 hours a day, when I'm in compression, I'm able to stand for longer, walk for longer, participate in activities with less pain. That is an improvement in quality of life. There's other great modalities. Red light therapy, vibration plates, all these things do things for symptoms, decreasing symptoms. You might see a specialized physiotherapist or a massage therapist known as a certified lymphatic therapist and they give this very gentle type of massage. It almost feels like, why am I paying for this?
What does this even do? But that lymphatic massage helps decrease the sensation of pain and move any of the edema that you might have up. And it also really calms down our parasympathetic nervous system because stres management is also a huge part of conservative management. There are more things that people try, rebounders like the trampolines,
Dr. Susan Peirce Thompson:
That
Emma Cloney:
Was one. Again, if you're a hyper mobile person and you maybe were one of those party trick people, be mindful if you're doing jumping on trampolines unsupported, you don't want to end up with a knee injury. And then the question I get asked the most often, yeah, but can we just get surgery?
Dr. Susan Peirce Thompson:
Yeah. What about surgery?
Emma Cloney:
Surgery is an option and is often needed for many patients, but not for every patient. Indications for surgery would be that you've tried those conservative management methods for at least six months consistently under the supervision of qualified providers and they're not necessarily giving you the relief from your pain and from your impacts to mobility that you need.That if you're at that place, that's the time to start talking to a qualified surgeon or to your physician about a referral possibly if you're in Canada out of country to find a qualified surgeon. The surgery itself, what is it? It is a very specialized form of reconstructive liposuction. So it is not cosmetic liposuction. And this isn't about, well, I just want to look different and better, which is still an okay goal as a lipedema patient. But this surgery is a specialized treatment that helps remove that diseased fat from the limbs, reducing their size and their volume and significantly improving your quality of life, your experience of pain and your mobility.
There's a randomized control trial that proves that now, which is great. Phenomenal even. Yeah.
Dr. Susan Peirce Thompson:
So it sounds like lipedema surgery can be really helpful. It can be really effective.
Emma Cloney:
The survey reported, or sorry, the study that of the 400-plus patients that received this in a randomized control investigator blind trial, that 68% of them had a clinically significant improvement to their pain scores, to their improvements of mobility and their quality of life. It was substantial, so much so that it changed healthcare policy in two different countries already.
Dr. Susan Peirce Thompson:
If you get the surgery, can the lipedema fat just come back?
Emma Cloney:
So the answer is compound. Technically, because lipedema is genetically inherited and lives in your cells, if you were to have an event such as another big hormone change or you gained a lot of weight, you might have some areas where you have more symptoms reappear. But the long-term studies show us that 12 years from a surgery, that 83% of those patients are still experiencing the benefits of their surgery of improved quality of life and decreased pain. It's really important also to mention this is not a one and done surgery. These are multi-stage. Some patients, including myself, have had nine surgeries for lipedema, depending on the size of your body and how affected you are. You may need a lot of surgery. If you're living in a smaller body, it might be less, but you have to have a full and complete treatment plan. And so there's a remodeling that happens sometimes.
Some people go for maybe one or two surgeries and then they stop for whatever reason. Might be a cost issue, whatever. But your body always wants to return to homeostasis to balance. And so you might find that, oh wow, you're seeing some growth in your arms or you're a little bit more in the abdomen. Your body is going to try and reset you. And so it's really important to finish your surgical course with a qualified surgeon who has good aftercare program and follows the standard of care and make sure you see yourself all the way through to the end. But generally, no, you're not going to have a regrowth and your treatment is good.
Dr. Susan Peirce Thompson:
How can someone find a qualified clinician to work with? It sounds like they're few and far between.
Emma Cloney:
It's hard. Now, if you're in the U.S. and then you can go to one of the fantastic resources you guys have is an organization called the Lipedema Foundation.You can find them at lipedema.org. And in the U.S., they actually maintain a list that you can search up of qualified lymphatic therapists. And then another great resource is that there are phenomenal groups online and supports in almost every country, whether that's a national association like Lipedema Canada that can link you in with the online communities. And often those online communities are going to be where you find international providers. Your Canadian, we're going to have to be looking for at this time, because of no Canadian standard of care for lipedema and a lack of education here we are having to send patients out of the country for surgery at this time. In the U.S., you do have some lipedema experienced surgeons and you have some that have even contributed to your standards of care.
So those are folks that you can find and again, find them through LipEdema Foundation, American Lipedema Association. And I don't know how far your watcher and readership goes, but if you're in other countries, start with your National Patient Association and go from there.
Dr. Susan Peirce Thompson:
How can people maintain hope? It sounds like this can be really discouraging and you've had such a long journey. And what is the hope? If it's a chronic condition, you're managing it. Talk to us a little bit. You're obviously very, very far down the path of advocating for yourself and good for you for figuring this out and being on the cutting edge of transforming care for people with lipedema in Canada. So yeah, talk to us a little bit about the hope frontier.
Emma Cloney:
Yeah. I mean, you've touched on a big one. The process of receiving your lipedema diagnosis at whatever stage that happens, whether you're 14 or you're 75, there's a really common series of emotions and it starts off with shock and then grief. An enormous amount of grief, a deep amount of frustration to why didn't anybody know this about me before? Why have I spent so many years beating myself up, starving myself, blaming myself, and an anger at a system that effectively might've failed you? And then some of the times we start off really passionate. We're like, okay, I'm going to find a way to get these surgeries covered. If you're in the U.S., there's a huge amount of insurance providers that do already cover this and I'm pleased to report that thanks to work that's happening from U.S. clinicians, you are about to have a diagnostic code entered as of next year.
It will be in your billing codes, a real diagnostic code for lipedema. And that hasn't happened anywhere else in the world yet, which is incredible. So there is hope depending on where you're from.
It is a really hard diagnosis. Living in chronic pain and not being believed is super hard. But what I can tell you is that taking agency, taking ownership about there are things with this condition you can affect. You can affect your mental perspective, which is going to be the first and most important thing that you address. For as long as you stay in that grief place and the anger place, you will not move past that and it will cause more symptoms. It hurts. But if you can remind yourself that you do have control over things that can make you feel better. For me, it was about figuring out how can I deal with the grief that I have to now wear medical grade compression garments. I was 37 when I got that young. And I had never worn shorts out in public as an adult because I hated when people stared at me and I hated the way that that looked.
So one of the most empowering things I did was I started wearing my compression and just putting my shorts right on over it. And I tell you, I started strutting through the world with a whole new level of confidence when instead of seeing the things that lipedema gave me as negatives, I started looking at them as positives. Some of the community, the people you're going to meet through the lipedema community might become the best friends you've ever had. And there's a huge amount of empowerment in knowing that there are people around the world researching this, fighting for your rights and answering questions that up until this point have been mysteries. And there's lots of big questions around lipedema. People worry about passing it to their kids and what does their older life look like? Just know that you don't have to deal with everything lipedema gives you all at once in one day.
Every day we just make choices about how we're going to navigate through the world. And I can promise you that there is life beyond lipedema.
Dr. Susan Peirce Thompson:
Thank you, Emma. So much hope there. It really reminds me of how I've sort of reclaimed agency after extreme drug addiction. You can take these conditions and live with them and turn them to good effect in so many ways and it's a condition to be managed for the rest of your life. It's a big deal. Emma, you've been so informative. Thank you so much for blazing the trail for millions and millions and millions of people with lipedema around the world. I hope this vlog is informative and this video reaches a lot of people. I know we have thousands, maybe even over 10,000 people in our Bright Line Eating community who have lipedema by the numbers here. So I look forward to this video getting out to the people who need it and helping people to sort out what might've been affecting them this whole time that they didn't know.
You're a blessing, Emma. Thank you.
Emma Cloney:
Thanks for having me on. Really appreciate it.
