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imagine there was a condition that affected 18 million women in the United States alone that made these women think that they had obesity or severe obesity when in fact they had another condition that their doctor had missed that gave them what they considered to be the symptoms of obesity but they actually have a completely uh other diagnosis and they don't know because their doctor doesn't know there is such a Condition it's called lipedema and today I have the privilege of speaking with a good friend of mine Siobhan Huggins who is a research specialist on the

lipid Dema project and today we're going to be talking about lipid Dema which most doctors have never heard of uh or they think they've heard of it but what they're really talking about his lymph edema uh and so sioban before we get started tell introduce yourself tell us a little bit about what you've been up to um and and why this is such an important topic that doesn't get talked about enough and most the average do literally the average doctor would not know what you're talking about if you said I think I have lipid Dema

yeah so um I was actually diagnosed with lipedema in 2021 um and it's important to note that you can have obesity and lipedema at the same time which was my situation before keto and what's funny is that I went keto lost a bunch of weight and then people were like hm your proportions are a little bit strange uh which is what led to the diagnosis um let let me pull up the the distribution while we talk about this because I think thousands and thousands of women are going to go hey that looks like me and

and so that's really how you initially make the presumptive diagnosis of lipedema is you go wait I carry my my my fat deposits I carry them in a really weird distribution it's not it doesn't look like just regular a regular fat person so these are the the different types of lip Adema so I just wanted to put that up while you continue to talk Siobhan thank you yeah and Beyond just these visuals um which can be really helpful especially if we can see things like the cuffing at the ankles like in the type three you

can see that kind of jutting out um that can be really helpful for suspecting lipidemia and then uh doctors can also do follow-up examinations like asking about things like pain um because lipidemia especially if it's not well controlled can come with a lot of pain and in some cases it's called a painful fat disorder because it's the actual fat that that is painful so it may be painful if you have a child that's sitting in your lap or a pet or something like that or blood pressure cuffs if you have tissue that's affected in the

arms um so that's another thing we can look at we can also look at something that as of yet I haven't seen elsewhere I have been looking but the nodules that are in the lipedema fat so while we were waiting I saw someone in the comments say that it's fascia so one thing that happens with lipedema is that you have this fat tissue and then it becomes wrapped in Scar Tissue so you can actually feel that in a lot of cases with palpation um and like I said I haven't seen that in any other conditions

thus far so it can be really really helpful um especially if you check where those nodules are most common like the fat pet at the back of the knee um and let me jump in sioban and just say this really quickly I have a confession to make uh early in my medical practice about I would say once a week we would have a lady who when she's getting her blood pressure taken by the nurse she would be complaining that it it hurts so bad and back then when I first started practicing I was very arrogant

and ignorant and so I would just think listen to this crybaby right what's wrong with her come on everybody sits down and gets their blood pressure taken shut up come on stop being a crybaby but almost certainly if I could go back in time and each time that happened if I could now know then what I know now I'd be like oh my God that is a sign that she might have lipedema let me let me go and do a full exam let me look at her fat distribution let me see if she has inordinate

amount of pain and so you're saying somebody just with your your dog your your 20 pound dog sitting on your lap that would be painful whereas somebody with just a normal fat distribution obese or not not that's not going to be painful and in some cases even just like the pet sitting on the lap may actually cause bruising in that person um so that's another thing is bruising in the areas where lipedema is suspected that is seemingly random or from very innocuous contact like that pressure of the pet being on you and I really like

that you brought that up because I think it's important for doctors and patients to understand what the trigger Things Are like what is something that should make you go oh maybe this is what is happening and there is that painfulness of the blood pressure I've seen that come up in the lipedema groups a lot um it could be the tourniquet from blood draw it could be the pet thing it could be someone talking about heavy feeling legs which is often due to swelling that can come with lipedema or painful legs or um like trunk like

legs or like if they try to lose weight they may lose it from the waist up or just disproportionately lose it in the upper body and it's like I'm trying so hard to diet and exercise and all this stuff sometimes even keto but I just can't get it off my legs or my thighs or my hips or whatever it is and then if you pair that with the potential of cuffing with the potential of swelling with the potential of the nodules being there then it it's like there are things that um doctors and even just

people themselves can kind of go through this checklist um and it is not rare like even just walking around in town I'll be checking out people's ankles because that cuffing is so distinctive and it's like oh there's one I wonder if she knows and in in the in the stage two and stage three pictures uh in this uh image that we've got on the screen you can see that and so basically somebody with lipedema they hands and feet will look essentially normal and they won't look obese they won't look fat right but then starting at

the wrist and starting at the ankle it's almost as if there's a cuff and then their legs have been filled up with uh cottage cheese or something and so it's like normal feet normal hands and you're exactly right Siobhan since lipedema is now on my radar every time we're at the mall the restaurant any social Gathering where there's a bunch of people I'm like she has she has liida and then now I'm faced with the quandry do I tell her or do I wait another 10 years for her doctor to finally get on board and

say oh I think you have lipedema tell me Siobhan have you ever known a single person with lipedema to have been diagnosed with it the first time their doctor saw them has that ever happened in the history of the world not that I'm aware of it's possible it may be happening now because um Dr tro and Dr Linus for example lipedema is on their radar I know they're diagnosing people um so it may happen sometimes it's just not very common unfortunately and I think this is getting better lipedema is often diagnosed very very late in

life so I know a lot of women who are diagnosed in their 60s in their 70s sometimes even in their 80s and this is a disease it's important to mention this can often start showing up in puberty so these women may have been suffering lifelong only to be diagnosed in their 60s absolutely the three most common times for it to be or for it to start are puberty pregnancy and menopause that's when it starts in the individual but that by no means uh is equ equ equivocal to when it gets diagnosed which can be literally

decades later I thought that women with hypothyroid had to wait a long time to get a diagnosis but lipedema is you guys win hand hands down so I think that's a good clue and a good place to start digging into this is why would it develop at men at pre at at puberty pregnancy and menopause why are those the most common times for it to develop now keep in mind this can happen in men but the men it's super rare in men and the men who do have it all with without exception to my knowledge

have a hormone abnormality or they're taking exogenous hormones or they have U uh been castrated these are the men that that can potentially develop lip idema so tell us about how why it develops as far as the science currently knows and uh maybe you can blend in your diagnosis story with that and kind of what you noticed as on your path as well yeah so in ter terms of why it develops at those times I don't think as far as the research is concerns we fully know but because it's almost exclusively impacting women and it's

hitting at these trigger points of hormonal flux that's one possibility so hormones do a lot of stuff and in women the two things that come to mind is how we grow our fat so we tend to have hyperplastic fat growth that means we make a bunch of new fat cells um that may be a possibility uh the other aspect that was actually brought to my attention by leslin Keith who I work with at the lipedema project is that each of these points is also a point of natural insulin resistance so it may be that these

are super high stress points where perhaps there are even signs in children before puberty we don't know there hasn't been a study like that done before but then it manifests very obviously when you hit these stress points and I there was some stuff presented at the lipedema World Congress where it seems like weight gain in general and poor metabolic Health in general may also be contributing to progression so if you combine in a point of natural insulin resistance a time of a lot of fat growth in women um also a nutrient stressor you have to

grow a lot um both in puberty and pregnancy it's just kind of a coalition of how much stress can we put the body under all at once and then something like this pops up um and you asked another question but I don't remember so let let me pull up um this is your before and after uh the first picture in 2013 the second picture in 2020 and uh Siobhan continues to look healthy iier and healthier every time I see her in person blend in what you just said about that what when it starts and how

it progresses with your story and uh how first of all you started keto um sometime after 2013 for weight loss because you're like dang I'm overweight I need to lose some weight but then as you lost the weight you notice this this distribution of of fat and tissue like who just walk us through that story yeah so um I started gaining weight when I was really young um probably around like 9 or 10 years old which was also around the same time I started getting uh really bad depression symptoms so that all coalesced at the

same time and in terms of the pain component I did have pain I did not recognize it as pain so the tourniquet was painful the blood pressure cuff was painful one time I had to have a tick removed from my arm by burning it off um and that was extremely painful but the issue was I would kind of get this reaction of you're overreacting so I was like okay I'm overreacting and just like okay we're gonna ignore all of this it's not relevant um there were also times when like my now husband would grab my

arm to get my attention it wasn't hard at all it was literally just hey and it would hurt but again it was like well I'm just overly sensitive and I went keto in 2016 in August of 2016 so over seven years ago um and I did start it for weight loss because I wanted to look nice for my boyfriend um vanity is a wonderful motivator I had tried calorie restriction over and over again um usually with the calorie restriction I would lose about 20 lbs maybe um but it was really hard and the issue with

calorie restriction for for me is it would actually make my depression symptoms worse um so it was even more difficult to sustain especially because I knew my boyfriend was dealing with my mood swings and depression and it's like which do I choose um it was actually my mom who suggested keto I I was like okay and then shortly after she was like don't bother with the car restriction thing it's dumb um here read the Obesity code and it's like okay no C restriction and in those first two months I lost 20 lbs but it was

easy this time and the other thing that happened that had never happened before is at the two month mark my depression symptoms were gone oh which was weird because first clue about keto being maybe more than just a weight loss diet yes and that the depression symptoms being gone like keep in mind I hadn't been non-depressed maybe since like kindergarten or something first grade probably and it was a bizarre feeling for me like I was confused trying to figure out what felt weird and it was that I wasn't depressed and that was actually what made

me decide like okay I'm in this for life like even if I gain the weight back I'm not stopping because I can be happy which is nice when you haven't felt that in a long time also very important to actually feel good and not be depressed every single day of your life do you think that the depression is is caused by the same mechanisms that lead to lipid Dema or do you think that the depression is caused by the body modification of lipid Dema a combination is is any research pointing and try teasing that apart

so from my own experience I think there's overlap so I think there's a metabolic component because if I have carbs even now now it will trigger depression and anxiety symptoms so I don't do that it's not worth it um but the other aspect I've noticed is that with lipedema comes swelling and I've noticed that if I swell up here like I can feel it because I'll have like this shortness of breath feeling um it can also trigger mood symptoms so I think it might be both at the same time where the swelling from liida and

the Met IC component in terms of possible nutrition coming in um possible nutrient deficiencies possible inflammation in the brain all of that stuff may also play in um but if I stay keto and um address the swelling up here then I'm all good which is good and so we we're talking about the ketogenic diet and a lot of you are like oh that's just the way she chose to lose weight you know you can lose weight lots of different diets but stick around because the ketogenic diet with regards to lipedema is about to become much

more important uh and I want all the women watching I want you to tell me in the comments have you been diagnosed with lipid Dema or Andor do you suspect you have lipidemia and your doctor's never said a word to you about that when you look at yourself in the mirror and then you saw the images we put on the screen earlier are you now suspecting maybe you have lipidemia as well so you went keto and you're like dude I lost the 20 pounds like I always do but my depression is so much better now

did you notice any other improvements when you adopted a ketogenic way of eating oh yeah let me get my list um so The Chronic acne that I had was gone the first Improvement that I actually saw was my hair used to be so frizzy and unhealthy looking and it was my sister who commented and said like did did you change something with your hair and I was like no and she's like it looks healthier so my skin health started improving my hair health started improving I would have eczema um in between my fingers it went

away um the keratosis Polaris I still have it a little bit um but it largely went away 90 95% better right that's what most people5 yep that's what most people notice yep yeah I had um at this point I would say probably either something like chronic fatigue or just from the depression but my energy levels started going up um way better mood stability and just stress resilience I had chronic lower back and knee pain uh which is gone which will also come back if I eat carbs which is again why I don't do that because

it can be really really painful um so a whole bunch of stuff just like everything menstrual Health improved my cycle regulated out my cramps did diminish to near nothing like I told that to my gynecologist at one point she's like I wish I heard that from my patients I don't usually hear that um so everything improved and one thing I didn't notice until way down the line because you said um I noticed my disproportion I didn't notice I I knew I was disproportionate I knew especially my arms were big in the very first picture that

I have um when I first met Dave in person he has his arm around me and I'm like so self-conscious in that picture because it's like my arms are so big but I thought it was just how I was proportioned I didn't really think about it beyond that right it was other people um it was the second picture the after picture were people three different women with lipedema reached out to me privately um which kind of goes to your question of do you talk to someone I think it depends on the person but they reached

out to me privately and said there's some things in this picture that lead us to believe you may want to look into this um and it's a really difficult thing because you're essentially saying to someone your body looks weird your body looks weird in a familiar way so look into it so and I think that I was just about to ask you this question I'm so glad you went there so if anybody watching if they're like oh my God that that stage two or stage three looks exactly like my friend my family member so where

as long as somebody approaches you privately and says I saw this video and I think maybe you should look into lip EMA you weren't offended by that and so is that is that true sioban yeah I wasn't offended but I'm also I mean my mental health was in a good place so people com my body is like yeah whatever um my trick my trick is that I have cards um that say like do you have a patient that looks like this or does this look like your legs and I'll give them to people but I'll

give them to them in a context where it's not personal or I'll leave them in public so I'll say like I know of this charity I'm handing out these cards for people would you like one um or let's say I'm having a ation with someone and it's like oh yeah I'm really interested in this topic here's the general description um if you know somebody who might be dealing with this I can give you one of these cards or I can give you more information blah blah blah so then it takes the focus off of them

y so they are not in that place of vulnerability and it's more just a FYI here's something I'm interested in this is personal to me um I think this is important to raise awareness Ness in general not related to you specifically and I think that can help so all 1900 of you guys watching you've heard the ninja psychology if and I guarantee you all you guys are are thinking of somebody you know like oh my God that's that's definitely what she's got find a gentle loving diplomatic way to share this video with them because I

promise you and Siobhan can can verify this or deny promise you they want to know that they have lipedema because right now they think I'm just I'm I just have obesity and it's all my fault and I suck and I'm a loser and that's not the case they actually have a measurable medical condition that causes this mild distribution of adapost tissue on their body and I guarantee you they hate it and they would give anything in the world if they had a a diagnosis that they could say Ah that's why my legs do that that's

why my upper arm looks like that it's not me I'm not a bad person I'm not a loser I'm not a glutton I'm not a sloth I have lip EMA and so please if you share this video with someone share it diplomatically and lovingly don't just say hey I think you got this try to be a little more subtle than that yeah and the other thing that goes with this is like Beyond just knowing what's happening there are actually things that you can do so we've talked a little bit about a ketogenic diet but there

are complimentary therapies um someone in the chat mentioned compression wraps that is one thing that you can do they mentioned that it's painful so one trick is that there are things you can do to decrease pain and then you can slowly increase other things that you're doing that may have caused tenderness before so there are things like manual lymph drainage which can help with pain there are compression garments um there are brands that you can buy off of Amazon that's usually what I do in some cases you may need to have uh custom fits for

you uh aquatic exercises can be really helpful because it acts like a natural 360 compression to get the fluid out of the legs right um some let let me add this Siobhan the the edema of lip edema is almost always nonpitting edema and so you can push your finger over your shin and hold it for 20 seconds if you just have edema then you're going to leave a deep indention there but with lipid Dema not only is it going to hurt when you're pushing but you're not going to leave much of a dent there in

most cases yeah so some women may also have lymphadema along with lipedema in which case they may see the pitting edema I have actually also seen the pitting edema in myself with heat induced edema when it got really really bad um so that's worth noting but typically with lipedema if there's not something else going on it will be that non-pitting edema in what that is is the fluid is actually bound up in the tissue um so it'll just spring back um so that is one thing that we can look at is it's called a stemmer

sign but where you press into like the dorsum of the foot um and then you can pinch the skin at the toe simmer simmers is over the the second metat Taro and if you if you can't pinch that up then that is a sign that that you may have lipidemia keep in mind none of the eponymous signs are 100% and so don't let your doctor just hang their their white lab coat on that nothing else you need to have the full workup done but stemmers can be a positive sign uh for many people with lipidemia

now we mentioned keto earlier and uh we kind of hinted that keto was more than just weight loss when it comes to uh lipedema and so before we get into that I would you mind breaking down because I've seen some questions in the comments what's the difference between lipedema lymph feda lipolymphedema and Durk there's there's really four different things that can kind of look the same to especially to the untrained eye and let me just add your doctor should not have an untrained eye okay your doctor should know what all four of these terms mean

and how to diagnose each one but I bet bet me your doctor doesn't know okay go ahead sioban sorry yeah and a quick note on that if your doctor doesn't know but he wants to know have him Reach Out to the lipedema project we'll hop on a zoom with him walk through what to look for all this stuff like we have a whole bunch of stuff we're happy to share with any doctor who's interested no problem Link in Link in the show notes guys if you want to teach your doctor about lipid Dema now give

us the how we distinguish one from the other sioban yeah so lip idema is what we have been talking about um it's essentially a fat disorder with a edema component so usually what happens is the fat portion is the most predominant that we see from the very beginning or at least from the very beginning that we notice um and then over time the swelling component may get worse and then they may develop something called lipolymphedema where the we don't know why it may actually be the fat gain or something else going on but they develop

lymphadema on top so then they have both on the other hand lymphadema is edema disorder but it can actually have a fat component because that fluid sitting in the tissue they've done Mouse studies on this can stimulate fat growth but usually that comes along later so early in their swelling with lymphodema and it'll be that pitting edema and then over time they may accumulate fat so you may notice this in someone who has had a lymph node removal for example they may develop lymphadema in their arm and it will be much bigger than the other

arm in some cases because of that uh fat accumulation from the fluid from the Y they have the people watching you may know someone who had breast cancer had lymph node reection either in the groin or in the the axilla and they'll one of their arms will be noticeably bigger than the other arm that's lymph edema and so that that's typically not always but typically caused by an an tomical uh cause either postsurgical or or perhaps there's something that needs surgery that hasn't been removed yet that's basically including the lymph nodes and causing lymph edema

but that's not the same thing as lip edema yeah and so what we're looking at when we're comparing the two of them like let's say someone comes in with lip EMA we're looking for something that is symmetrical so it's down both sides of the body and bilateral so both sides down the body about the the same um there can be a little bit of a difference I'm slightly larger on my left side for example um humans are never fully symmetrical um but so we're looking for something that's equal on both sides um we're looking for

the hands and feet not being affected uh especially if it seems like it's early in we're looking for that painfulness and tenderness not everybody has pain at this point on a ketogenic diet I do not have pain but I did wonderful so it may be where if the lipedema isn't being well controlled it's more likely to have pain or if it's in like a active phase something is triggering progression maybe there's pain stuff like that um and then with lymphadema typically there's not the same type of pain um my understanding is that there may be

like an achiness but not really like what we see with lipedema and then often it is just down one side um and then that pitting edema if it's in the arm then the hand will also be affected and then durums um there can be pain with durhams so durums is essentially the growth of these fatty tumors so there is actually a blood supply going into them and it can be painful but again we're looking at is there disproportion is there cuffing is there a swelling component all of this stuff and then we can kind of

take a look the other thing is with fpid Dema there are some common things that can come with it so 30% of those with uh lipedema and two different studies uh also had hypothyroidism and then hypermobility is also common in lipedema so around 58% from one study and what's interesting with that is that when they divided It Out by stage as the higher stage there was also a higher prevalence of hyper Mobility so in the most progressed stage of lipidemia it was around 80% were also hypermobile and so when we're going up the stages right

this makes me think like maybe the lymphatics or something is having an impact on the connective tissue or the other way around um because there definitely does seem to be a connective tissue component but we don't know but it is interesting to note that there is that overlap that seems to be progressing along with the stage that's fascinating and and so just to be clear what we're talking about today h you can't see it there let me pull you and you and I back up is what we're talking about is lip edema not Lim edema

those are two different things although they can overlap so lipedema is what we're talking about and the these are the come back there we go these are the stages some people say there's four stages some say three but you can see the progression you can also see that this person is appears to be much heavier much more obese from the waist down but then until it gets down to the ankle and it almost looks like there's some sort of constriction band where from the ankle down to the toes looks essentially normal but above the ankle

it it's obviously that there's some M distribution of the fat now uh we we talked earlier about this is almost assuredly related to hormones almost assuredly related to hyperinsulinemia to some degree and thus uh we are we hinted earlier that keto maybe did more than just help with weight loss do you want to jump into to the research now yeah let's do that because it's funny um I was talking to someone uh about obesity in ketogenic diets and how controversial it is and all this stuff and I brought up lipid and they were like well

if they've ruled out that c restriction doesn't seem to do anything I bet keto is way more accepted and it actually is we have a lot of research on keto Filipa at this point by different teams across the world so this is it's not quite replication but it's pretty dang close to it um because we have so many different groups trying a similar intervention and getting the same results over and over and over again um so this was one of the first case reports that ever came out this is from Italy um and they had

a patient here who was diagnosed with lipedema they decided to introduce a ketogenic diet and what happened with her is she obviously lost weight um you can see here the disproportion is much less noticeable in the after picture but then the other cool thing is she was hyperinsulinemic before um she had a fasting insulin of around 29 which came down down uh I think to like eight or something like that so it largely normalized um her vitamin D came up as You' expect from someone who's pulling back from metabolic syndrome her pain her litha related

pain came down significantly from using a ketogenic diet um and then her quality of life improved she felt like her lipido was more manageable and that is one thing that we see in our community too is when we start implementing low carbon ketogenic diets it makes all of the other stuff you're doing just work better like it all fits together um and this pretty much set up for what we were going to see with the following studies um because it's not just case reports we also have this pilot trial um to see okay we have

the one person what about the next one um this one was out of Norway it was nine women so just kind of testing it out see what there is to see is it worth the money and effort of larger studies um this one is interesting because they did seven weeks of a ketogenic diet and then they flipped them back over um to a u a UK caloric standard Nordic Fair what's funny is uh if I remember correctly with this one they were trying to prevent weight loss with the ketogenic diet and they I think they

still had trouble with them losing weight anyway um but they did not regain weight um with the Nordic diet and the Nordic diet is around 200 gram of carbs so it's back up in the carbs um so they didn't regain weight after six weeks of the higher carb diet after being on keto but their pain levels return to where they were before they went on a ketogenic diet so they had this amount of pain they went on a ketogenic diet it came down and then that pain went back up and this one I really really

like because say it suggests that the pain is not weight related so I think particularly in the US after going to the Congress and talking to people from all over the world particularly in the US if someone seems fat we tie anything that is wrong with them to them being fat yes so of course you're in pain you're fat um of course you're depressed you're fat of course you blah blah blah blah just continuous this shows that with lipedema that does not not seem to be the case it is something else um so this one's

really important you can also see the triglycerides came down with keto and then right back up to I don't know if this was fasted triglycerides or what but 198 I don't know if it were my family member I'd be having a talk um but yeah yeah and uh their hip circumference came down um it went down on the ketogenic diet and even though they didn't regain weight on the Nordic diet it didn't decrease any further um stayed kind of the same and that's another thing that pops up is often with lipidemia when you try to

do things even including bariatric surgery um you may lose from the torso up into the face potentially the arms if you don't have lipedema tissue there but your lower body is just completely stubborn it doesn't want to do anything but with ketogenic diets we're seeing more reduction even in the areas with lipid tissue not to normalization in most cases um so I still have disproportion um but it's more of an effect than the other diets that have been tried and it comes with all these other benefits which is great tell me let's let's H let's

conjecture just a smidge if somebody could go back in time to your eight-year-old self and say hey little cute little Siobhan let's let's slowly change your diet uh and and let's get you on a just a Whole Foods real one ingredient ketogenic diet meat and veg a few berries a few nuts that's keto keto is not some weird fad weird thing it's just meat and meat and veg and do you think that the um lip idema would have still developed and progressed or do you think that that might might arrest it because I'm sure there's

some kind of little gen Gene genc predisposition to develop lipidemia I I think that's almost certain but I don't think that your genetics are are your death sentence I don't think you're just doomed I'll bet you that my opinion is probably if we could do that you would have never noticed any uh abnormal dep deposition of of adapost tissue what do you think about that I know you you know the research better than most anybody in the world you're a research specialist for the lipedema project what do you think I think we don't know like

that's the most honest answer I can give um but we do there is a clinic in Spain who is diagnosing teenagers and implementing ketogenic diets in those same teenagers with lipedema um and so they do still have some development up to that point because the whole reason they went into the clinic was because they have lipedema sure um but what they're reporting is that it like I think when they have is something like five years down the line or something like that and it is supported by what we're hearing from our community and what I've

experienced myself which is it seems to either slow down or in some cases stop progression but with that said even if you are keto there are other things that can happen that may trigger progression so we've had people talk about getting sick um talking about going through surgeries particularly G gynecological surgeries I've had issues with dairy which is not fun every single time I go back on Dairy I gain weight and originally it was a thing where I would gain the weight and then I would get it back off again and then eventually I gained

the weight and it stopped coming back off and it's like oh um so I can't have dairy because I think if I continuously ate it it would cause lipid progression so Dairy and nuts it's like every single ketogenic Community I come across it's like Dairy and nuts are the two things that always come up it's in the mental health space it's in the lipedema space it's in the autoimmune space it's not everybody I do know people with lipedema who can have them without issues but there are a lot of people who can't and we have

to be aware of that that with lipedema there can be food sensitivities that are also happening um and they may also trigger symptoms so if in like a perfect realm we went back to baby me and fed me a ketogenic diet that had lots of nutrients and lots of meat and all this stuff I don't know what it would have done I think it may have helped and it definitely would have helped my depression definitely would have helped with that um but this is the question that mothers are having to ask because when you've been

diagnosed with lipedema then you have to look at your family and potentially your daughters so I do know women with lipedema who are looking at their 8 nine 10 11 12 year old girls and saying I recognize that they're showing the same signs that I did and then it becomes a question of what do you do and I know ketogenic diets in children can be controversial I think depending on the child you may have to go about it certain ways but I think everybody can agree a whole food diet for children is not controversial and

it may be that if we catch it early enough maybe that's all they need and it may be just as they get older the less tolerance they have um but I don't think we have answers yet and it's something that we do need we need to figure out what does lipedema look like in children and what does early intervention do with early intervention in teenagers it seems to help um it doesn't make it so you don't lepida anymore but um we can see symptom reduction we can see um a lot of those things being retained

over years and the main thing especially from women who were diagnosed in their 60s and I think it can sometimes put a lot of pressure on the younger people who are diagnosed is they just want them to do better than they did and to have more support and more resources and more understanding and and managing earlier because the sooner we can get that management in I mean it's Improvement in quality of life over however many years between where people were diagnosed and where they're getting diagnosed now and it's also an opportunity to experiment because for

a lot of people it seems like some of the stuff that you can do just works a little bit better it's a little bit more effective a little bit easier to work with earlier in um so I'm experimenting with stuff of course I am um I'm me but um and I have that privilege of being able to do that type of experimentation because my upkeep is not nearly what it is for someone who's very late stage and having to deal with multiple things and all this other stuff absolutely now let's talk about your experiments I

know you initially started off ketogenic uh back in I think you said 2016 is and tell us about how your diet has kind of transformed the experiments you've done what you found that helps what you found that absolutely does not help at all Le at least for you and uh let's talk about that I know for a while you were keto I know for a while you were carnivore I think you typically you do better with much higher fat than many people recommend walk us through your diet and how it's transformed yeah so it's really

weird to me because my eating Behavior has always been changing anyway but then there were periods where things just worked and so I just stuck with that and it was fine but uh in 2016 went keto it was omnivorous keto mostly Whole Foods like sometimes Quest chips or something like that um but mostly I was just making my own stuff or sometimes I would get fast food that was keto like um uh like lettuce wraps burgers sandwiches that type of stuff um and then after about a year I went to keto Fest where I saw

Amber's presentation on Carnivore and I was like oh I want to try that sounds interesting why not if I don't need to eat vegetables I'll just only eat the ones I want to eat went down until I was barely eating any and then in October of 2017 I was like okay I'm just going to do a full flip to carnivore and I did that and I lost additional weight and it was great and blah blah blah and then in 2019 I started hearing about high fat carnivore it's like oh that's interesting um there were large

portions of carnivore where I was already eating high fat like the first year I was eating primarily cream cheese and pork um so it was probably close to two to one because I was eating a lot of cream cheese um and at that point Dairy didn't actually seem to be an issue um but uh right after the high fat carnivore experiment where I lost even more weight and got down to my lowest adult weight ever um immediately after that I did a high carb experiment to be clear I did not know that I had lip

EMA at the time or I would not have ever done it um there were there was so much Fallout from that um one of which was I had designed the experiment to replicate something that my friend Dave had done which was high carb low fat but I tried to do it with friend being da Filman Hy responder Guru yeah um but I had done Whole Foods because I didn't want to trigger depression symptoms and I was like if it's Whole Foods it's healthy um or healthier maybe it'll help um it didn't uh it still triggered

depression symptoms for two months afterwards and this was an 8 day experiment eight days it was also high calorie for the last 5 days it's around 3,200 calories I believe almost entirely carbs um and then in the last portion I also introduced bananas and honey because I wasn't getting the LDL drop I was looking for I shouldn't have used fructose cuz science reasons but um so I had two months of mood Fallout um I had a presentation at keto Fest right after that it is now one of my favorite presentations talking about insulin resistance and

its function in the immune system all this stuff but after I gave it and people were responding well to it and like saying it's interesting blah blah blah um but in my head I was like they're lying to you it was horrible they didn't get it at all what a waste of time blah blah blah but at the same time because because I have this history of depression I would be looking at those thoughts and I would be looking at the actual reality and I was like something is wrong like this is not normal something

is bad and that continued for two months um I also gained weight so I gained um I don't actually remember how much it was I gained um like 20 pounds both during the experiment but then in the weeks afterwards I continued gaining weight um even though I went straight back to high fat carnivore and after that I could not get that weight back off for the life of me and eventually I found if I took Dairy out I would lose weight again but I would have these really really bad Dairy cravings and so it would

be on again off again on again off again on again off again so that like like I said I would gain the weight and I'd go off Dairy and I'd lose the weight but eventually it stopped coming off and what actually led to my lipedema diagnosis was that I had while I was high fat carnivore I did a fasting experiment so it was 14 days of a water fast and then it was an additional seven days of a fat supplemented fast so I added in pure fat um to basically supplement energy and see if anything

changed and what I noticed is despite being at a slightly higher weight it was really hard it was really really hard to do that fast which was confusing to me and I was talking to someone who's very experienced with fasting and I was like it's really strange like throughout this experiment I'm getting really really fatigued I'm constantly thinking about food I get these intrusive thoughts about eating and that doesn't usually happen during an experiment like I go into experiment mode and I'm just concentrated on that I was getting cold I was sleeping through the night

but then also needing a nap but then also having trouble getting to sleep all of this stuff my cycle became disrupted and that was setting off red flags and they were like I don't think you should fast like this doesn't sound very good um but it was the after picture of that experiment where people reached out to me and said said it seems like you might have lipedema it's like huh and then of course I look into lipedema and it's like well if a bunch of my fat is wrapped up in scar tissue of course

I fast like a lane person because I functionally as far as my body concerned I am um you don't have access to the fat because of I don't have access to the fat so your body acts like you're starving because as far as it is concerned as far as all of the information it's getting you are um so after that I stopped fasting because it was really uncomfortable it's like why am I going to fast if it's uncomfortable um and then I continued with high fat carnivore because it's how I felt my best it was

how I had the most energy um I didn't get the muscle fatigue that you can sometimes get with lipedema like it'll feel like this lacid um lactic acid like burn even just from like minor rep movements um so I felt best with that and stuck with that and then um in the beginning of the following year I started seeing a lymphatic therapist and I wanted we started out with just manual lymph drainage and getting the fluid moving and all this stuff but during our appointments like you can imagine like having me in one place for

an hour like I'm talking out loud and we're having this conversation as we go through the massage and it's like what do you think about this blah blah blah blah blah blah blah and we start speculating and wanting to experiment with different things and one of those things I was thinking about was okay we know there's fibrosis with ladema um and we know we can get swelling in certain parts of our body so what if we try to help the body by breaking up that fibrosis where there are lymphatic bottlenecks so the back of the

knee where the lymphatic vessels all come up in and out um at the anginal lymph nodes between the thigh and the pelvis so we started working and um I would joke to people that I was ripping apart my body once a week but it wasn't actually a joke because what we were doing is we were taking machine assisted cupping so we would add this reverse pressure and we would pull the tissue apart and we would increase gradually so it was never to the point of pain um if it was painful we worked it back sometimes

that would happen um if I was swelling really bad for example it would be more painful so we were way more gentle on those days and it was really cool because over several months we noticed that my lower legs were swelling less and she could start to feel the underlying muscle and the tendon and the tissue because there wasn't that fluid there anymore it's like okay this is great so let's do it even more and we kept going and kept going and kept going for a year straight every single week like whole body fibrosis breakup

because I'm so smart and I don't think of these things um but one thing I noticed during this time is that for one the dairy weight stopped coming back off so I would gain weight from dairy and then it wouldn't come back off and another thing is that carnivore was getting really difficult and I thought it was a psychological thing um because that's where your brain goes like Oh I'm just getting bored it's really difficult to be this strict because I'm doing this lipedema experimentation and it's really mentally taxing because I have to take all

these notes and all these measurements and all these pictures blah blah blah and then I was talking to Dave and he was like maybe it's not psychological like M like you're doing you're inducing this into your body every single week it's so intense why don't you just go off a carnivore and see what happens it's like okay um so uh that was in November mid November and I introduced some plants into my diet and I would make note of how enjoyable they were um so sometimes it's like the neon lights in your brain go off

it's like oh yeah this is exactly what I want and you start craving it and all this stuff but I would also be getting satiated on it so it's like okay this seems functional I seem to be doing okay um but then I would also note down what it was and how I felt about it CU some things I ate it would just be like it's it's tastes fine but it's just not that interesting and I wouldn't want it again but I would also take note of that and then after I had about six of

each I looked at the nutrients and the ones that were really really interesting to me versus the ones that weren't and all of the ones that were super interesting were top of the charts in vitamin K it's like oh that's interesting like experimenting do you never know the weird stuff you'll come cross um so what's interesting is that in carnivore where you're going to be getting vitamin K's egg yolks but you'd probably have to eat a lot to get the levels I was getting um Dairy but I wasn't eating dairy because it makes me fat

it's like H um and then liver which I don't eat because it makes me puke so the main sources where I would be getting it I wasn't eating or wasn't possibly eating enough of so it's like like oh that's interesting and even now like I've introduced certain things and then I try them and I expect it to be high vitamin K at this point like I had tried um Romanesco which is related to broccoli so broccoli super up there so I bought Romanesco thinking okay this will be great ate it and it was just like

this is not what I wanted and then I look it up and Romanesco is nowhere near the level of brockoli is in vitamin K so it's a persistent pattern pattern and I would intentionally not look up vitamin K levels before I tried the thing because I didn't want to influence my psychology because I just am this neurotic um but um so there was this common pattern that was very very very consistent and it's like why why vitamin K that's a weird thing like I usually think of it in terms of clotting and so I was

looking stuff up and uh um one of the things that came up is that in some in vitro experiments I believe vitamin K promoted collagen synthesis and you're talking about K1 or K2 I think it was K1 which would make more since but I don't know I have to go back and check um because it may have been K2 because one of the other things I noticed throughout this is that when I was eating the high vitamin K1 PL plants my Dairy craving stopped completely and they have not come back so it's like was that

a vitamin K thing this whole time um and yeah so and so highlight fermented food yeah have you tried experimented with fermented food I have tried uh Sauer Prout and I don't know if it's an amount thing but it was another that wasn't particularly interesting um kombucha I do really like and I get the one that's like not um like pasteurized I don't know if that makes a difference um but yeah kombucha seems good but I also tend to have a lot of it because I get the zero sugar kombucha that's available now um so

yeah and it's like what was it really something that dumb um and I just increased the problem to the point where I was struggling with my current diet and it's such a weird thing because you like get into this thing and you like identify with this thing and then it's like wait what do I do I've changed my environment I've changed my body at this point and I'm not like I just needed a friend to tell me like do something else if it's not working try something else friend trust so now sioban we've got 2200

folks watching this right now we said earlier at least 18 million women in the United States alone have lip adeema and they have no idea because the doctor has no idea their doctor said yes you're just obese move more and eat less te talk to the people right now and tell them if you experience the following things then you should ask your doctor about lipedema and let me throw this back up it's lip idema that's what we're talking about write this down guys if you think you have it what should women it's predominant what more

than 99% women who have it super rare in a man uh how can a woman why would she suspect she has lip idema so um the common things uh that come out is uh when you try to lose weight could be keto could be with something else you're losing fat disproportionately so you might notice that your waist is getting smaller and smaller but your hips and your thighs and potentially your lower legs potentially your arms Ms are staying the same some people by the way also may have lipedema tissue in their abdomen um particularly their

lower abdomen so you may feel uh nodules in your fat tissue when you're feeling it it may feel like little uncooked grains of rice may feel like marbles may feel like even larger walnuts or plum-sized very firm and the fat tissue itself may feel very loose it may feel like it's just soft and doughy or almost uh water logged in a way um you may bruise easily in ways that do not make sense like you may wake up with a bruise no idea where it came from particularly in your lower body and especially your thighs

you may notice that your legs are painful or your arms again you may have it uh or your hips uh wherever this may be happening on your body it may be tender with pressure or it could be without pressure it could be an aching it could be um some ways it's described as like a ripping sensation a tearing sensation burning um it could be any number of things but pain in the fat and pain with pressure is another thing it's pretty easy to check just be gentle um uh the heaviness and tightness in the legs

is another thing we ask people about um so again this may get worse over the day um which would be orthostatic edema so you're swelling more as you're standing the fluid is accumulating um and then when you go to bed and get up in the morning you may find that your ankles aren't swollen anymore or you don't feel as swollen um you may also experience things like he heat induced edema and it's particularly bad in the legs um you may notice the cuffing um that isn't something I noticed until afterwards but I have both wrist

and Ankle cuffing um and yeah I think that's mostly it and you may have noticed that these symptoms got worse after puberty pregnancy or menopause or gynecological surgery or some other trigger events perfect now I have all of Siobhan's links down in the show notes if you suspect you have lipedema then check out the links below uh Siobhan is a research specialist with the lipedema project there's a a link to the lipedema project there's also links to the research studies and then after we're done with this Siobhan's going to look over and see if I

forgot to include or link to anything and I'll add it if I did if you know somebody and you're like oh my gosh Aunt Judy she this this just looks like her please and if you don't want to share it directly with Aunt Judy you don't have to because you don't want to hurt anybody's feelings maybe just share it on your social media and then talk to about it with a Judy like I want God have you ever heard of lipid Dema I'd never heard of it before look at these pictures and Aunt Judy might

go holy crap I think I have that and then Aunt Judy can go talk to her doctor and her doctor's probably not going to know what the hell lipedema is Aunt Judy can say why don't you Google it doctor and after her doctor Googles it then she can start having a therapeutic conversation with an informed doctor any final words of wisdom my good friend Siobhan Huggins that you want to share with the listeners before we go yeah so two quick things one is that there are things that you can do like we talked about um

so whatever you're going through now if you are not doing any management strategies it is very possible that things could improve a lot we have a lot of transformation in the community and it's really wonderful to see the other thing is if your doctor isn't supportive or isn't curious you can always reach out to the lipedema project directly um we're always happy to provide resources and information we have an upcoming event in April that's focused on ketogenic diets for lipedema um and yeah just reach out if you need anything because it's the whole reason that

we're here that's so wonderful sioban thank you so much for hanging out with me this has been amazingly informative I guarantee you you have changed the life of hundreds of women in this one hour alone so keep doing the work you do I love how your brain works uh and and don't ever stop fighting for better health for women with lipedema thank you so much for joining us guys uh don't forget to share this video hit the thumbs up if you haven't already done so see you next time