December 2021 PMID 34049453

Standard of care for lipedema in the United States.

Karen L Herbst, Linda Anne Kahn, Emily Iker, Chuck Ehrlich, Thomas Wright, Lindy McHutchison, Jaime Schwartz, Molly Sleigh, Paula Mc Donahue, Kathleen H Lisson, Tami Faris, Janis Miller, Erik Lontok, Michael S Schwartz, Steven M Dean

Mentions

79
Peak: 9 in Oct 2021
across 5 sources since May 2021

Extended reach

205,608
potential audience

Total likes

7,576

Video views

88,055

Mentions per month

May 2021 – Sep 2025

Where it's discussed

  • X / Twitter55 posts
  • News11 articles
  • Facebook8 posts
  • YouTube4 videos
  • Bluesky1 posts

AI synopsis

What people are saying

Discussions highlight the importance of the new standard of care, with examples like mentions of over 25,700 views and downloads, emphasizing its impact. The tone is informative and advocacy-driven, with many posts quoting authoritative figures and encouraging further research and education, reflecting high engagement and perceived importance.

AgreementStrong agreement

Most discussions express strong support and validation for the standards of care, emphasizing the importance of recognizing and treating lipedema properly.

InterestHigh interest

The posts demonstrate high interest through sharing research updates, citing authoritative sources, and discussing clinical implications and ongoing studies.

EngagementHigh engagement

Many posts actively engage with the topic by referencing medical professionals, suggesting further actions, and sharing detailed information, showing deep involvement.

ImpactHigh impact

The widespread sharing of this publication, including links to the official guidelines, studies, and recognition at conferences, indicates a significant influence on awareness and future clinical practices.

Abstract in brief

  • Lipedema is a connective tissue disease primarily affecting women, characterized by painful and fibrotic fat buildup in specific body areas, often triggered by hormonal changes.
  • The consensus guideline developed by a US committee outlines 85 statements on lipedema’s causes, treatment options, and related health issues.
  • These guidelines aim to enhance understanding of lipedema to facilitate early diagnosis and improve treatment strategies for those impacted.

Top posts

Most liked on X and Bluesky
Molly Nettles-Sleigh, OTD, CLT-LANA
@NettlesMolly · X

https://t.co/LsFfK80TEl After two years of hard work, we are published on the first day of #lipedema Awareness Month! This was truly a group effort, and my hope is this improves quality of care for this population in the U.S. #lipoedema #lymphedema

Jun 1, 2021 · 8 likes · 3 shares · 571 followers View post →
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
@JeffLubell_C19 · X

@SEDSConnective There's #lipedema as well, in which excess protein-rich lymphatic /interstitial fluid forms subcutaneous adipose tissue, which becomes fibrotic, pro-inflammatory and painful to the touch. https://t.co/WJD7JXeyGE

Dec 30, 2022 · 7 likes · 2 shares · 3,571 followers View post →
LegsLikeMine
@Legs_LikeMine · X

Here’s the standard of care for lipedema. It’s new and was out together by 20+ doctors who’ve dedicated their careers to research of lipedema. Enjoy! https://t.co/xkkOOo6B9W https://t.co/fWpd2DjM4q

May 14, 2022 · 5 likes · 1 share · 1,200 followers View post →
Lipedema Foundation
@LipedemaFndn · X

The Lipedema Standard of Care guidelines are a hot topic at this year's AVLS Conference! The guidelines include how to recognize, diagnose and treat lipedema. Learn more here: https://t.co/4p0oscTlfa #lipedema #lipedemaawareness #AVLS #AVLSconference

Oct 8, 2021 · 4 likes · 3 shares · 1,658 followers View post →
Beatriz Barban
@beatrizbarban · X

Assunto importante! https://t.co/YOzCkGQV3k

Apr 30, 2024 · 4 likes · 606 followers View post →
Rene Sugar
@renesugar · X

Standard of care for lipedema in the United States https://t.co/su4IJJXFIY "Metformin inhibits hypoxia-induced fibrosis in adipose tissue, and can reverse fibrosis after injury."

Sep 16, 2021 · 3 likes · 1 share · 3,952 followers View post →

All mentions

Kathleen Lisson
@kathleenlisson.bsky.social · Bluesky

Just got an email sharing that our research has been cited over 100 times! Check out the most popular paper, the Standard of Care for Lipedema in the United States: pmc.ncbi.nlm.nih.gov/articles/PMC... #lipedema #sandiego

Nov 30, 2024 · 1 like View post →
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
@JeffLubell_C19 · X

@dbkell @AshHultman https://t.co/WJD7JXe0R6

May 15, 2024 · 1 like · 3,571 followers View post →
Shamps
@EveShamps · X

Qual a melhor DIETA para tratar LIPEDEMA? https://t.co/Ao0duiVogq via @YouTube

May 1, 2024 · 463 followers View post →
Beatriz Barban
@beatrizbarban · X

Assunto importante! https://t.co/YOzCkGQV3k

Apr 30, 2024 · 4 likes · 606 followers View post →
InstituteofLymph
@LymphPhysio · X

Lipoedema progresses in distinct stages. Picture from https://t.co/u86mXseVp8. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://t.co/6glS3Q8do8) https://t.co/EqpE84rCeo

Nov 5, 2023 · 6 followers View post →
Catherine cawley.
@grannycc13 · X

@guitarnanna @tazalot1981 @IrishTimes So wish the media/medical profession wld discuss the 10-18% of female born people with loose connective tissue disease Lipoedema usually misdiagnosed as obese. HELP US. See standards of care USA. https://t.co/oc2dYLGOG7 https://t.co/TjTzgQdFOa https://t.co/rLsET9W3eB

Mar 4, 2023 · 32 followers View post →
Lympha Press USA
@Lympha_Press · X

Feb 15, 2023 · 254 followers View post →
Tina Rodwell #TeamPatient
@TinaRodwell1 · X

RT @JeffLubell_C19: @SEDSConnective There's #lipedema as well, in which excess protein-rich lymphatic /interstitial fluid forms subcutaneou…

Jan 6, 2023 · 2 shares · 3,400 followers View post →
siobhan_huggins
@siobhan_huggins · X

@dwnews For anyone thinking this is "just obesity"/"an excuse for obesity" please review the Standard of Care paper released in 2021 as it documents the issues that present with lipedema, including extensive scarring of the fat tissue (warning: there are pictures) https://t.co/90ndyEYafT

Jan 4, 2023 · 2 likes · 14,736 followers View post →
Gill Berry
@fahyberry · X

RT @JeffLubell_C19: @SEDSConnective There's #lipedema as well, in which excess protein-rich lymphatic /interstitial fluid forms subcutaneou…

Dec 30, 2022 · 2 shares · 1,997 followers View post →
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
@JeffLubell_C19 · X

@SEDSConnective There's #lipedema as well, in which excess protein-rich lymphatic /interstitial fluid forms subcutaneous adipose tissue, which becomes fibrotic, pro-inflammatory and painful to the touch. https://t.co/WJD7JXeyGE

Dec 30, 2022 · 7 likes · 2 shares · 3,571 followers View post →
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
@JeffLubell_C19 · X

@LisaQuadt @SEDSConnective @talklipoedema @karenlubell This article is a good place to start. https://t.co/WJD7JXe0R6

Aug 18, 2022 · 3 likes · 3,571 followers View post →
Miriam Berchuk MD
@MiriamBerchuk · X

@AndrewCAhn2 hEDS also present in ~50% of patients with lipedema. https://t.co/fs4pYh4Oh0

Jul 29, 2022 · 1,620 followers View post →
Rene Sugar
@renesugar · X

RT @renesugar: Standard of care for lipedema in the United States https://t.co/su4IJJXFIY "Metformin inhibits hypoxia-induced fibrosis i…

Jun 29, 2022 · 1 share · 3,952 followers View post →
hollyhopeaz
@hollyhopeaz · X

@yrfatfriend You can't be obese (which her body size would otherwise indicate) and have a face like that. That looks like a lipedema body to me. https://t.co/I2n0p26H6L If medicine were more gender-equal, the 11% of US women with this disease would be diagnosed early and treated.

Jun 19, 2022 · 1 like · 8 followers View post →
4Lippy73
@LippyFighter · X

RT @Legs_LikeMine: Here’s the standard of care for lipedema. It’s new and was out together by 20+ doctors who’ve dedicated their careers to…

May 15, 2022 · 1 share · 18 followers View post →
LegsLikeMine
@Legs_LikeMine · X

Here’s the standard of care for lipedema. It’s new and was out together by 20+ doctors who’ve dedicated their careers to research of lipedema. Enjoy! https://t.co/xkkOOo6B9W https://t.co/fWpd2DjM4q

May 14, 2022 · 5 likes · 1 share · 1,200 followers View post →
LegsLikeMine
@Legs_LikeMine · X

But they’re getting closer with an eye in five particular genes at this time. Definitely triggered by hormonal changes. Here’s the new standard of care. https://t.co/xkkOOo6B9W https://t.co/LXyCjYoB1s

May 14, 2022 · 2 likes · 1,200 followers View post →
Unanon
@unanon · X

Diagnostic criteria have been researched and documented. Here is a Standard of Care from 2021. TW - possible graphic content. https://t.co/Gy1NbKlDib

May 13, 2022 · 104 followers View post →
FoucaultWasRight
@BiopouvoirMemes · X

@UntoNuggan High overlap with hypermobility & lipedema. 1) Herbst KL et al., 'Standard of care for lipedema in the United States.' Phlebology. 2021 Dec;36(10):779-796. https://t.co/iyOli46EHa

Mar 29, 2022 · 1 like · 96 followers View post →
Suzy Sachs
@Soopah63 · X

RT @DrJSchwartzMD: Standard of Care for #Lipedema in the United States

Mar 27, 2022 · 1 share · 451 followers View post →
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
@JeffLubell_C19 · X

@CovidSolidarit1 @ellbail @PainOnTap Conventional approach to testing and treating is described here; I don't know to what extent these techniques will work with LongCOVID as they were designed to deal with lipedema. For my daughter (MECFS) we've just treated on our own. https://t.co/WJD7JXe0R6

Mar 6, 2022 · 2 likes · 3,571 followers View post →
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
@JeffLubell_C19 · X

@Doc_Valerie Thanks. Can you clarify what you mean by non-manipulative? Do you mean other modalities for breaking up fibrotic adipose tissue (like vibration) or systemic medications like metformin? There's a good consensus doc available. https://t.co/MYuNXSyrGv

Feb 11, 2022 · 1 like · 3,571 followers View post →
siobhan_huggins
@siobhan_huggins · X

@vegansince96 @ScepticalDoctor I now use it for continued depression management, and because it helps with symptoms of lipedema for me (a chronic loose connective tissue disorder). Notably, ketogenic diets are recommended in the 2021 Standard of Care for Lipedema in the United States paper.

Jan 18, 2022 · 14,736 followers View post →
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
@JeffLubell_C19 · X

@SizeMichael There is a special type of liposuction used for lipedema that has been found to be effective. It is discussed here. https://t.co/MYuNXSyrGv. We are not at the point of considering surgery, but if it gets worse this will be one thing we consider.

Dec 19, 2021 · 3,571 followers View post →
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
@JeffLubell_C19 · X

@SizeMichael Subcutaneous adipose tissue can eventually lead to weight gain that is difficult to remove, but it's not ordinary fat. You can read about here: https://t.co/593duaQz6s and https://t.co/MYuNXSyrGv

Dec 19, 2021 · 1 like · 3,571 followers View post →
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
@JeffLubell_C19 · X

@thrashballs Consensus guidelines discourage long-term use of diuretics for Lipedema. Apparently the diuresis concentrates protein which quickly attracts water again and ultimately forms adipose tissue. https://t.co/WJD7JXe0R6

Dec 18, 2021 · 3,571 followers View post →
Tristan Lane
@Tristan27856485 · X

RT @VeinForum: Seeing lipedema as a vascular specialist? Review the current standard of care: https://t.co/nepHdKH9N1 @PhlebologyJourn #me…

Nov 27, 2021 · 3 shares · 980 followers View post →
Phlebology Journal
@PhlebologyJourn · X

RT @VeinForum: Seeing lipedema as a vascular specialist? Review the current standard of care: https://t.co/nepHdKH9N1 @PhlebologyJourn #me…

Nov 27, 2021 · 3 shares · 730 followers View post →
fivehundredpoundpeep
@fivehundredpou1 · X

RT @VeinForum: Seeing lipedema as a vascular specialist? Review the current standard of care: https://t.co/nepHdKH9N1 @PhlebologyJourn #me…

Nov 10, 2021 · 3 shares · 636 followers View post →
American Venous Forum | AVF
@VenousForum · X

Seeing lipedema as a vascular specialist? Review the current standard of care: https://t.co/nepHdKH9N1 @PhlebologyJourn #medtwitter #journalwatchwed https://t.co/cwPs9fndVf

Nov 10, 2021 · 1 like · 3 shares · 3,582 followers View post →
Lympha Press USA
@Lympha_Press · X

Incredible momentum for #lipedema: With over 25,700 views and downloads, the Lipedema Standard of Care is the most-read article in @PhlebologyJourn in the last six months!

Oct 15, 2021 · 1 like · 254 followers View post →
shaune jonasson
@ashamark · X

RT @LipedemaGallery: Standard of Care for lipedema in the United States, which was published in the peer-reviewed journal Phlebology in May…

Oct 14, 2021 · 1 share · 18 followers View post →
Lipedema Simplified
@LipedemaNews · X

Standard of Care for lipedema in the United States, which was published in the peer-reviewed journal Phlebology in May 2021. Subscribed to our daily flash briefings. Visit here at this website

Oct 14, 2021 · 1,010 followers View post →
Lipedema Project
@LipedemaGallery · X

Standard of Care for lipedema in the United States, which was published in the peer-reviewed journal Phlebology in May 2021. Subscribed to our daily flash briefings. Visit here at this website

Oct 14, 2021 · 1 like · 1 share · 838 followers View post →
the Lipedema Project
@LipedemaProject · X

Standard of Care for lipedema in the United States, which was published in the peer-reviewed journal Phlebology in May 2021. Subscribed to our daily flash briefings. Visit here at this website

Oct 14, 2021 · 1,736 followers View post →
Lympha Press USA
@Lympha_Press · X

At the @myAVLS Annual Congress this morning, #LymphaPress hosted a special breakfast honoring the authors of the groundbreaking document, “Standard of Care for #Lipedema in the United States.” Read the document here: https://t.co/abZwm0rdOI #AVLSCongress @DrKarenH https://t.co/jJwWVKEh42

Oct 8, 2021 · 254 followers View post →
Valeria Giordano
@ValeriaLipedema · X

RT @LipedemaFndn: The Lipedema Standard of Care guidelines are a hot topic at this year's AVLS Conference! The guidelines include how to re…

Oct 8, 2021 · 3 shares · 56 followers View post →
Lipedema Foundation
@LipedemaFndn · X

The Lipedema Standard of Care guidelines are a hot topic at this year's AVLS Conference! The guidelines include how to recognize, diagnose and treat lipedema. Learn more here: https://t.co/4p0oscTlfa #lipedema #lipedemaawareness #AVLS #AVLSconference

Oct 8, 2021 · 4 likes · 3 shares · 1,658 followers View post →
Bioflect
@bioflect · X

There are still a lot of unknowns when it comes to #Lipedema. A study is being conducted to help provide standard care for this loose connective tissue disease. Click below to better understand the painful condition: https://t.co/M7V0dayKJY https://t.co/p7NAskV6JM

Oct 5, 2021 · 1 share · 275 followers View post →
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
@JeffLubell_C19 · X

@BluesteinLinda @dysclinic After doing a little research, I would recommend that you hold a podcast on “Lipedema and Hypermobility” and invite Dr. Karen Herbst and Karen Ashforth as guests. Dr. Herbst is a leading academic studying lipedema. See, e.g, https://t.co/O2itYrzjAa and https://t.co/WJD7JXe0R6

Sep 18, 2021 · 1 like · 3,571 followers View post →
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
@JeffLubell_C19 · X

@UncoveredMyths This seems like a good place to start for treatment options. https://t.co/MYuNXSyrGv

Sep 17, 2021 · 2 likes · 3,571 followers View post →
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
@JeffLubell_C19 · X

@ellbail Yes, Dr. Herbst's work seems extremely relevant, and interesting that she notes overlap with hypermobility. Can you share the source of the tables you shared? This is also on my reading list: https://t.co/MYuNXSyrGv

Sep 17, 2021 · 1 like · 3,571 followers View post →
Rene Sugar
@renesugar · X

@JeffLubell_C19 Standard of care for lipedema in the United States https://t.co/su4IJJXFIY "Metformin inhibits hypoxia-induced fibrosis in adipose tissue, and can reverse fibrosis after injury."

Sep 16, 2021 · 1 like · 3,952 followers View post →
Rene Sugar
@renesugar · X

Standard of care for lipedema in the United States https://t.co/su4IJJXFIY "Metformin inhibits hypoxia-induced fibrosis in adipose tissue, and can reverse fibrosis after injury."

Sep 16, 2021 · 3 likes · 1 share · 3,952 followers View post →
A Thousand Islands Named Lesley Scott
@__melanieann__ · X

milestones- puberty, pregnancy & menopause. It is a connective tissue disorder producing fibrotic adipose tissue. Lipedema is genetic and fairly common but not well known. Doctors will often confuse it with obesity. https://t.co/YzBZpkOL98

Aug 8, 2021 · 152 followers View post →
Corinne Wilson
@sagedoesscience · X

RT @NJPDO: Exited to be part of this great team https://t.co/MGeFr74oEn #obesity #omasocial #lipedema

Jul 21, 2021 · 1 share · 81 followers View post →
Nicholas Pennings
@NJPDO · X

Exited to be part of this great team https://t.co/MGeFr74oEn #obesity #omasocial #lipedema

Jul 18, 2021 · 1 like · 1 share · 13 followers View post →
Jaime Schwartz MD
@DrJSchwartzMD · X

Standard of Care for #Lipedema in the United States

Jun 14, 2021 · 3 likes · 1 share · 1,060 followers View post →
Lio Lipedema Italia (Charity)
@LipedemaItalia · X

Giugno si è aperto con la pubblicazione di un documento fondamentale: gli standard di cura per il #lipedema negli Stati Uniti. Un documento che potrà diventare riferimento per i pazienti, i professionisti e le istituzioni. https://t.co/UzcixBKMN9 #Lipedemaawarenessmonth

Jun 14, 2021 · 1 like · 154 followers View post →
Chantelle Clarke
@ClarkeC1027 · X

RT @NettlesMolly: https://t.co/LsFfK80TEl After two years of hard work, we are published on the first day of #lipedema Awareness Month! Thi…

Jun 3, 2021 · 3 shares · 650 followers View post →
Emma Reinhold
@DrEReinhold · X

RT @NettlesMolly: https://t.co/LsFfK80TEl After two years of hard work, we are published on the first day of #lipedema Awareness Month! Thi…

Jun 2, 2021 · 3 shares · 6,932 followers View post →
Valeria Giordano
@ValeriaLipedema · X

RT @NettlesMolly: https://t.co/LsFfK80TEl After two years of hard work, we are published on the first day of #lipedema Awareness Month! Thi…

Jun 1, 2021 · 3 shares · 56 followers View post →
Molly Nettles-Sleigh, OTD, CLT-LANA
@NettlesMolly · X

https://t.co/LsFfK80TEl After two years of hard work, we are published on the first day of #lipedema Awareness Month! This was truly a group effort, and my hope is this improves quality of care for this population in the U.S. #lipoedema #lymphedema

Jun 1, 2021 · 8 likes · 3 shares · 571 followers View post →
Margarita Correa MD
@mcorreamd · X

May 31, 2021 · 1 like · 1,257 followers View post →
Adipose Papers
@adipose_papers · X

Standard of care for lipedema in the United States https://t.co/CjpQNXkkGU https://t.co/bG1KzNxwtU

May 29, 2021 · 1 like · 2,444 followers View post →