Legs Like Mine The Podcast Episode 41 - What It's Like to Have Lipedema

Legs Like Mine The Podcast Episode 41 - What It's Like to Have Lipedema

There are all kinds of online resources for providers showing them what to look for physically when diagnosing lipedema. But not a ton of information on what it feels like from the perspective of a patient - the pain, tenderness, nodules, fatigue - what that is all like. This is from me, a 52 year old woman with stage 3 lipedema. What it was like to have surgery and regrowth and what it's like now. If you've ever wondered how it feels, this is the episode for you. #lipedema #lipoedema #lipedemaawarenessmonth #advocacy #patientperspective

Legs Like Mine the Podcast Episode 40: Lipedema on the National State

I'm pretty excited today! In this update, we share a major national development that could reshape the future of care, research, and awareness for lipedema and other lymphatic diseases: the work of the National Commission on Lymphatic Diseases. Established through federal legislation in 2022 after years of advocacy led by organizations like LE&RN and patient groups, this Commission has brought together experts, researchers, and patient representatives to address critical gaps in diagnosis, treatment, education, and research. After more than 70 meetings and input from over 200 stakeholders, the Commission has now presented its report to the NIH, outlining key recommendations that could drive meaningful progress nationwide.This milestone reflects the power of sustained advocacy, and what’s possible when our community works together. While there is no immediate action required, future engagement will be essential as Congress reviews these recommendations. Links: Government Request for Information from 2024: https://grants.nih.gov/grants/guide/notice-files/NOT-HL-24-014.html [https://grants.nih.gov/grants/guide/notice-files/NOT-HL-24-014.html] National Commission on Lymphatic Diseases: https://www.nhlbi.nih.gov/advisory-and-peer-review-committees/national-commission-lymphatic-diseases [https://www.nhlbi.nih.gov/advisory-and-peer-review-committees/national-commission-lymphatic-diseases] Lymphatic Education & Research Network: https://lymphaticnetwork.org/news-events/lern-national-lymphatic-commission [https://lymphaticnetwork.org/news-events/lern-national-lymphatic-commission]

Legs Like Mine the Podcast, Episode 39 Yes it's lipedema, now be careful of vultures trying to sell you something

In this episode, I talk about my experience as a patient who shares online and just some of the crazy things people have tried to sell me. But then I also share several valuable and FREE resources providing everything you need to practice solid conservative care (the cornerstone of lipedema management) on your own, without buying anything! I'm linking to a few resources for you, below: The Lipedema Foundation - a wealth of info for you and your provider, including how to diagnose, treatments, and research: www.Lipedema.org [https://www.Lipedema.org] The Standard of Care for Lipedema in the US: Get this to your doctor. https://pmc.ncbi.nlm.nih.gov/articles/PMC8652358/pdf/10.1177_02683555211015887.pdf [https://pmc.ncbi.nlm.nih.gov/articles/PMC8652358/pdf/10.1177_02683555211015887.pdf] The Lipedema World Alliance Delphi Consensus-Based Position Paper on the Definition and Management of Lipedema: https://www.nature.com/articles/s41467-025-68232-z [ https://www.nature.com/articles/s41467-025-68232-z] Also, www.AmericanLipedemaAssociation.org [ www.AmericanLipedemaAssociation.org], providing education, awareness, advocacy and community for lipedema patients, providers and caregivers.

Legs Like Mine The Podcast Episode 38 - Why Do we Have Lipedema Awareness Month Anyway?

In this episode, we talk about the top ten reasons why we have a lipedema awareness month every June, and outcomes I expect to see. We'll talk about why I don't want to "preach to the choir" with my outreach this year, but my intention is to reach medical providers who are the boots on the ground, who may not know how to recognize lipedema, or what to do once they have a patient who meets the clinical diagnosis criteria. We'll also talk a little bit about a paper that just came out discussing the need for more research on the hot GLP-1 drugs and their potential impact on lipedema patients. I hope you'll join me this month for some fun and mostly-unscripted podcasting as we work together to learn, raise awareness, and enjoy being part of a community together! I don't believe in gatekeeping important medical information for profit. How do I find new research? I go to a website called Pubmed, which is the National Library of Medicine. It publishes papers on all kinds of medical topics daily. I search for "lipedema" in the search bar and sort by the newst, daily. Use this link [https://pubmed.ncbi.nlm.nih.gov/?term=lipedema&sort=date]and it'll do the search for you! https://pubmed.ncbi.nlm.nih.gov/?term=lipedema&sort=date As promised, here are links to research I mention in this episode: 1. Mohseni Y, Vazirnia A, Minokadeh A, Amron DM, Coleman WP 3rd. Targeting Inflammation and Fibrosis in Lipedema: The Potential Role of Glucagon-like Peptide-1 Receptor Agonist Therapies. Dermatol Surg. 2026 Jun 1;52(6S):S72-S75. doi: 10.1097/DSS.0000000000005172. Epub 2026 May 18. PMID: 42210892. Link: Dermatologic Surgery [https://journals.lww.com/dermatologicsurgery/fulltext/2026/06001/targeting_inflammation_and_fibrosis_in_lipedema_.15.aspx] (https://journals.lww.com/dermatologicsurgery/fulltext/2026/06001/targeting_inflammation_and_fibrosis_in_lipedema_.15.aspx) 2. Kruppa P, Crescenzi R, Faerber G, Forner-Cordero I, Cornely M, Shayan R, Karnezis T, Simarro JL, de Souza PF, Herbst KL, Ghods M, Michelini S. Lipedema World Alliance Delphi Consensus-Based Position Paper on the Definition and Management of Lipedema: Results from the 2023 Lipedema World Congress in Potsdam. Nat Commun. 2026 Jan 10;17(1):427. doi: 10.1038/s41467-025-68232-z. PMID: 41519859; PMCID: PMC12796449.Lipedema World Alliance Delphi Consensus-Based Position Paper on the Definition and Management of Lipedema: Results from the 2023 Lipedema World Congress in Potsdam | Nature Communications [https://www.nature.com/articles/s41467-025-68232-z](https://www.nature.com/articles/s41467-025-68232-z)

Legs Like Mine The Podcast: Episode 37 Strength Is the Missing Lipedema Treatment Not Being Discussed

Could the most overlooked conservative treatment for lipedema be... muscle? For years, lipedema conversations have focused on diagnosis, compression, surgery, pain management, lymphatics, and symptom control. All important. But what if we’ve been missing one of the most important pieces for preserving mobility? A brand-new study found that **sarcopenia, loss of muscle mass and strength, is prevalent in women with lower-extremity lipedema and increases with disease stage.** That means as lipedema progresses, many patients may be losing the very muscle they need to stabilize joints, climb stairs, protect their knees, and stay independent. In this episode of *Legs Like Mine*, we break down the research in plain language and connect it to a second emerging framework explaining why so many women with lipedema develop knee pain, altered gait, valgus collapse, and cartilage damage that may be misattributed or undertreated. I’m also sharing my own story. As a woman with stage 3 lipedema, I was headed toward knee replacement. After just two months of progressive resistance training three times a week, I can do stairs again and cancelled my surgery. This episode is for: ✔️ Lipedema patients struggling with mobility ✔️ Physical therapists treating unexplained knee pain ✔️ Physicians managing lipedema care ✔️ Anyone asking whether conservative care has been too narrowly defined If preserving mobility matters, this may be one of the most important conversations happening in lipedema right now. As promised during the video, here are a few links: Study: Ozbek IC, Kuculmez O, Dundar Ahi E. Prevalence of sarcopenia and its functional correlates in women with lower-extremity lipedema: A cross-sectional observational study. Phlebology. 2026 May 8:2683555261451570. doi: 10.1177/02683555261451570. Epub ahead of print. PMID: 42102393.: https://pubmed.ncbi.nlm.nih.gov/42102393/ [https://pubmed.ncbi.nlm.nih.gov/42102393/] Paper: Amato AC. Chondromalacia in Lipedema: The Sarcopenic-Valgus Cascade That Keeps Getting Missed. Cureus. 2025 Oct 24;17(10):e95299. doi: 10.7759/cureus.95299. PMID: 41287673; PMCID: PMC12640552: https://pubmed.ncbi.nlm.nih.gov/41287673/ [https://pubmed.ncbi.nlm.nih.gov/41287673/] FREE copies of my Aqua Therapy for Lipedema and Lymphedema Book, along with others: https://legslikemine.com/books-and-downloads/ [https://legslikemine.com/books-and-downloads/] Dr. Amato's book - The Essential Guide to Living with Lipedema: Discovering the Truth and Transforming Treatment of a Misunderstood Condition: https://amzn.to/4u8X2v9 [https://amzn.to/4u8X2v9] Theraband Resistance Bands (Open): https://amzn.to/4eIXxHf [https://amzn.to/4eIXxHf] Check out the blog on www.LegsLikeMine.comIf you like our content, please consider donating a few dollars to say Hey Thanks for Making this: paypal.com/donate/?hosted_button_id=MQNCDP9HAK5WQ [paypal.com/donate/?hosted_button_id=MQNCDP9HAK5WQ]