🎧 Legs Like Mine: The Podcast
A patient-powered podcast about lipedema — the painful fat disorder that’s underdiagnosed, misunderstood, & often dismissed.
Hosted by Susan O’Hara, a lipedema patient, advocate, & author, this podcast explores the real-life challenges of living with lipedema through honest conversations, current research breakdowns, and empowering stories. Each episode combines science & storytelling to raise awareness, build community, and give voice to millions of people living with this chronic and progressive condition.
Follow me on IG: @legs_likemine
www.LegsLikeMine.com
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
9 Jun 2026
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)
2 Jun 2026
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.
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Podcast Authority Score: 18 / 100
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Questions about Legs Like Mine: The Podcast
Who hosts Legs Like Mine: The Podcast?
Legs Like Mine and Susan O’Hara and Susan O'Hara host the show. Published by Susan O’Hara.
How often do new episodes come out?
The show publishes weekly, based on its RSS feed.
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