Moments That Matter from the Voyage
"Moments That Matter," from the Voyage Senior Living, hosted by Melise Oakley, is a life‑giving space where we celebrate laughter, connection, and the moments that truly matter. Each episode invites listeners to slow down, breathe in the joy around them, and remember that life is meant to be lived fully.
Through real stories, shared wisdom, and genuine conversation, this podcast becomes a gentle reminder that even in challenging seasons, there is beauty worth noticing and moments worth holding close.
Moments That Matter from the Voyage
Lipedema: Unseen, Underdiagnosed
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Lipedema: Unseen, Underdiagnosed
Lipedema affects millions of women, yet it remains one of the most overlooked and misunderstood medical conditions today.
In this episode of Moments That Matter, host Melise Oakley welcomes Rebecca Edmondson, founder of Priority Medical Group, to discuss both the clinical realities of Lipedema and her personal experience living with the condition. Together, they explore why Lipedema is often misdiagnosed, how it differs from obesity and lymphedema, common symptoms, treatment options, and the importance of early recognition.
Whether you're living with Lipedema, caring for someone who may be affected, or simply seeking to better understand this underdiagnosed condition, this conversation provides valuable insight, practical information, and hope.
About Our Guest:
Rebecca Edmondson is the founder of Priority Medical Group in Marion, Illinois, a healthcare practice dedicated to compassionate, relationship-centered, and personalized patient care.
Moments That Matter is a podcast from Voyage Senior Living, providing resources, conversations, and encouragement for seniors, caregivers, and families navigating life's important transitions.
For more information, visit: voyageseniorliving.com
#Lipedema #WomensHealth #HealthAwareness #SeniorCare #Caregiving #MomentsThatMatter #VoyageSeniorLiving #PriorityMedicalGroup
Moments That Matter is brought to you by Binkley Ross Family of Funeral Homes and First Southern Bank.
SPEAKER_02Welcome to Moments That Matter, where we highlight people, organizations, and resources making a difference throughout Southern Illinois. Today we are joined by Rebecca Edmondson, founder of Priority Medical Group. Rebecca has built a healthcare practice focused on relationships, compassion, and personal care. We will discuss a condition that affects millions of women that is often underdiagnosed. Rebecca, thank you for joining us today.
SPEAKER_01Thanks, Melise. Thanks for having me.
SPEAKER_02So what is the condition that many are underdiagnosed?
SPEAKER_01So we're gonna talk about lipidema today. It's a chronic progressive connective tissue disorder that affects the fat cells, and it's almost exclusively affects women. It's caused by abnormal fat deposits, uh, most commonly in the hips and the thighs, legs, upper arms, upper extremities. It gives a uh unproportional, bulgy, bulgy appearance, but it's not just appearance, it's not just a disorder of the fat. It's a painful condition uh that often women are uh written off about. And uh you'll start to develop it in your early teens about puberty whenever it first starts. Most of these girls don't know what normal feels like, so uh they're not really complaining to anybody about it, but she feels fat or heavy way before anybody notices any weight changes in her uh because the consistency of the tissue is so different.
SPEAKER_02So, how did you learn so much about this topic?
SPEAKER_01I actually have experienced this myself. Um I went to school to be a PA, and during my standard of care education, uh, this is not a topic that ever came up. Uh, I had never heard of it. So you never not taught in school. Not taught.
SPEAKER_02Okay.
SPEAKER_01And so um in Europe, they treat lipedema and they have for uh a very long time, but in the United States, it's been often overlooked.
SPEAKER_02Our purpose of this podcast is to educate about this condition. With uh Priority Medical Group, you have a unique part of your clinic and your staff. Tell me a little bit about that.
SPEAKER_01Because of the fact that it's been underdiagnosed, there's very few places to go get any kind of treatments uh for lipedema. And so uh we have developed a program at Priority Medical Group where a patient can come and get their diagnosis uh or um get screened to see if they have this condition. And they uh have a place that uh for one, most of our staff is um lipoedema patients. Okay. So we um not only do we treat lipedema, but we know what it's like to live in that body. And uh we will be able to help them understand the disease process. And even though it's not considered a curable disease, uh, it is definitely well managed with the right appropriate uh conservative treatment plan. Most of these women will be complaining about leg heaviness and they have easy bruising, but underneath their pants that most practitioners don't get to see is a texture difference in their skin. And uh their skin is often described as orange peeled, um, where um when you have any pressure, it will cause an uneven or irregularity. Uh, squirrels like to call that cellulite, but it is more than or hell damage. Yes, absolutely. It's um fibrotic tissue that happens over years of um uh progression of this uh this condition. A woman may notice that their fat is cold. Uh they may notice that they bruise really easy. They may never complain about it because they've always had it. And so the fact that it's just their tissue, they don't really know us anything different. And so um, most of the time you'll have a uh not very heavy woman uh come in asking for ways to lose weight. And the thing that's very in particular about this condition versus obesity is it's resistant to diet and exercise or traditional diet and exercise. Okay. And so often they come in very frustrated because they've um worked out a lot and they're barely eating by the time they get to you. And so it's very frustrating to go um uh through all that process and not be able to see the results that most other women get.
SPEAKER_02So I'm sitting here like right now thinking, I bruise easy. And um, I just think, wait, just a minute, could this could be possibly me? Because what is the percentage of the population that has this?
SPEAKER_01Yeah, good question. Nine percent of the women in the United States have lipoema. That seems like it's um not that many. However, um, I bet most of you would be able to name a relative or a loved one that has this condition and they didn't even know they had it.
SPEAKER_02With the treatment and so forth, this is hope. Yeah. Right. Yeah. And that you're in the same boat. Like you said, with the people that are in your your clinic, your your providers and so forth, they're also walking through that. Absolutely. So that's that's probably, you know, what's more important than someone actually going through the process. So what's the most common misconception about this this disorder? They're lazy or they're fat.
SPEAKER_01There's a lot of shame. They're just frustrated and then they just think they're doing something wrong. And I remember when I got diagnosed, I remember going to the doctor and being like, okay, I wear my Fitbit and uh it tracks how many miles I run. And I uh scan every food item into my fitness pal. And so I just didn't understand how I could exercise this much, eat this much, and look like I did. Matter of fact, that provider came back with uh there are no fat people at concentration camps. Yes. And I feel like we didn't match in ideas of what I needed from my health because there are no healthy people there as well. And he missed the points, you know. And so a lot of women feel frustrated uh from years of symptoms and being dismissed because in school I was never really taught standard of care medicine doesn't really teach about um lip edema because it hasn't been a diagnosis code in the United States. So there's an ICD 10 code book right now that we uh what that is is when we have a condition, we have a treatment plan for that condition. So it helps people understand, insurances understand what is standard of care. If you have this diagnosis, this is the flowchart that we use. But this is a condition that most providers have never even heard of. And if it wasn't for the fact that I have it, I would have never uh known anything about it. And I could have potentially even written off some of my patients with these complaints because um it's not in the textbook.
SPEAKER_02So your story about your diagnosis?
SPEAKER_01The very first time it was pointed out to me was at a foot doctor appointment. And um wow, one of the can uh one of the uh big things that stand out is you have little tiny feet and your your it'll start at your calves in some people or at your knees in some people. And uh the the doctor said, it's weird that you have such tiny ankles, and it almost made me so insecure about it that I wanted to go get Botox in my calves because he said I had huge calves. And I mean, here's a physician talking to me about uh my calves, and he's thinking, well, she's out athletic and she, you know, must run all the time for her uh legs to be that muscular. And uh I'm sitting there thinking, maybe I should get Botox on it so they'll get smaller, so I won't be so weird looking. And so that right there tells you here's a clinician that's gone to school and being uh being trained to diagnose and treat, and then speaking to another clinician that does a physical on a uh human every day, and he recognized something was different already out there. So that's what sent me on a search to find out what was different about me.
SPEAKER_02I know I'm sitting here, I swam in college on a scholarship. Um, and I've been a fitness instructor, and I've always been, if you look at the charts, I've always been obese, considered obese or overweight. It just kind of like it triggers like, oh, wait, I need to be uh look at that and think about this and so forth. So, what's the difference between this condition and obesity?
SPEAKER_01They may overeat or or under-exercise, they're more sedentary. Um, they tend not to be as active, and that's me generalizing. But in the this population with lipedema, they tend to be the athlete. They tend to want to move because we feel better when we move. We feel worse if we sit still. So these are very active women or um young girls uh starting out with this condition. Matter of fact, we're doing everything we can not to get bigger because the fat condition has nothing to do with calorie intake and movement. It is a swelling in the fat tissue. So the edema is actually inside the fat cell. So what causes this? They are often triggered around the timeline of like puberty, anytime a shift in hormones. So puberty, um, pregnancy, perimenopause, menopause. And so we will just notice that our bodies change and then uh we we don't know why. The causes tend to be more um hormone. We believe it's more hormone-driven. It's not necessarily the cause, but it's definitely the stimulant that makes the condition worse. It's not uncommon for someone to have an auto underlying autoimmune condition that parallels with this. Say someone's watching this and they say, okay, so how do I get diagnosed? So I think what you really need to do is find a medical provider that knows about lipedema. Um, and you can get online. There's plenty of practitioners out there. When you go to your appointments, uh, they will screen you for questions like um onset of when you started having symptoms, uh, easy bruising, tenderness, leg heaviness. The tenderness is not like my legs just hurt. The tenderness is a baby is crawling across my lap and it feels like the baby's a thousand pounds pushing down on your legs. And you really look down and be like, how could that hurt that much? And uh there's no mark. And then two days later, you have this big, huge bruise that uh you almost forgot where it came from. The swelling or the weight loss. So you'll you'll exercise a bunch. You may lose 50 pounds even in some of these women, but never go down a pant size. They will look at um fat distribution, bruising, tenderness, texture, whether or not you have good blood flow to the area. A lot of uh people complain about this purple blotchiness that uh covers the area. It doesn't hurt, so they don't think twice about it. They've seen it a thousand times and it's not something they complain about because they're like, that's what it looks like when my legs get cold. And I'm sure there's like severity of is it is there stages. Stages of it. Okay. Different stages compared to um, so stage one would be uh where a woman may notice the swelling. Most other people wouldn't recognize it without seeing them or experience it in their body. So um stage one would be you may start to notice uh swelling in a certain area where uh your shirt may fit a little funny. So I bought um coats one year at the end of season, and then when I went to go put my coat on the next year, my cute new coat that I've never worn, and now all of a sudden my arms can't fit in my my jacket during uh perimenopause. So uh they would be looking for symptoms like that, and they will ask you about uh leg heaviness and uh family history. So most of us that have lipedema have a first-degree relative, our mothers or our siblings that have the same body habitus or weight distribution, uh, but it could happen on the dad's side, but dad doesn't have it, but grandma does, or an auntie might have it. And so um, we would ask for like family history and those type of things. And so we would probably ask you more about what diets and exercises have you tried in the past. We would ask you about things that does help your swelling or your, I wouldn't have even called it swelling. I don't think I thought of it as swelling. I just thought that it was like I'm big. There's another condition called lymphedema. And lymphedema is something that we may have heard of because we do diagnose this in the United States, and that swelling causes pitting. And so the one characteristic between someone that has lipedema and lymphedema is lipedema. If I press on it, it doesn't cause the pitting. So in lymphedema, we'll press on your calf. And if I hold it long enough, when I take my finger off, it stays dented in. And a person that has lipidema, when I press on it, it comes right back. But when I press on it, you can see where it dimples all around where the the uh pressure is placed.
SPEAKER_02Wow. So much information. Where can they get a hold of you all to get just resources for for your clinic?
SPEAKER_01We have just won a uh a lawsuit against insurance companies for not treating lipedema. And so you're going to hear and see more out there about it. And so that's one of my main goals is to make sure that these women that are suffering from this condition that have been written off for so many years, I really would like to be able to help the patient learn to find someone to diagnose to advocate for themselves on this condition. And I would love for more providers to um take part in learning about the condition and be able to recognize it. If you are a medical provider that's like, hey, this sounds like somebody I've treated before, I know what it feels like to not have the answer. They can always refer over to priority medical group. Or if you are a patient and you don't have somebody to refer to you and you just go, this is me. I am that person that just um I lost this much weight and I can't uh change even pant sizes, then uh you just call priority medical group and you can get in with our um specialists that are gonna help with diagnosis treatment. And in some cases, we refer on to surgeons that can uh help uh help with the people that are more advanced in stages. And so where are you located at? Right next to Kroger's and Marion. It's um 1306 North Acheson.
SPEAKER_02I would love for you to come back sometime and because I know this is just one snippet of what you do. Um thank you so much for coming in and sharing your wealth of knowledge. Thank you, Melise. Thank you for joining for another episode of Moments That Matter. If you enjoyed today's conversation, please subscribe, leave a review, and share this episode with someone who may benefit from learning more about the health care resources available in our community. Until next time, remember that every moment matters.
SPEAKER_00Moments That Matter is brought to you by Binkley Ross Family of Funeral Homes. Locally owned and operated, Binkley Ross Funeral Home, Blue Funeral Home, Mitchell Hughes Funeral Hall. Call 618-997-7771 or go to BinkleyRoss.com. And First Southern Bank. Bank with people you know who know and love Southern Illinois, community banking at its best. Find us at first southernbank.net.
