Legs Like Mine

22/09/2025

New Episode Alert!

Our latest episode of Legs Like Mine: The Podcast is out now:
https://open.spotify.com/episode/1WU6GTYvnutuhRanfIwuNO?si=ZWg2tmgDTlOOJVzipzjiIw

In this episode, I talk about why ICD-10 codes for lipedema can’t wait. While some say we should hold off until ICD-11 arrives, the truth is the U.S. has no timeline for adopting it. That means patients remain invisible in the system — no accurate prevalence data, no consistent coding, and no recognition in the knowledge bases that guide care.

Here’s what you can do:
1️⃣ Email the CDC at [email protected]
before October 9, 2025 to support ICD-10 codes for lipedema.
2️⃣ Ask 10 friends, family members, or supporters to do the same.

Together, we can make our voices heard and ensure lipedema is finally recognized in the U.S. healthcare system. 💜


American Lipedema Association Lipedema World Alliance Lipedema Foundation

21/09/2025

We had a really meaningful Lipedema meetup in OkC yesterday. Thank you to Amber Graham Knapp for coordinating, leading, and sharing her personal story. I learned a lot from her.

17/09/2025

Lipedema Patient round Table tonight! I and the American Lipedema Association will be guests tonight at seven central

Register here: https://zoom.us/webinar/register/WN_xg-D8VvpTvaa4JyjtYwIlw?fbclid=IwZnRzaAM4IPpleHRuA2FlbQIxMQABHkyMNvvRx2QdPgLjH0_QyKBhyFeE0gTSBJIEJJW6FefDAvE2OADlKyJx5O9T_aem_tu7RKMy_gIxGE4e5Zw_Okg #/registration

Be inspired by some of the top social influencers and clinical minds in the lipedema world! Our monthly Roundtables offer candid talk, real-life advice, and lots of encouragement.

14/09/2025

I am pleased to announce that I will be speaking at the Lipedema World Congress in Rome this November, discussing the important role of patient organizations.

The Congress is a unique and prestigious gathering of the international nonprofit patient organizations combined the world’s leading experts and healthcare professionals from diverse disciplines, uniting lymphologists, plastic surgeons, angiologists, phlebologists, nutritionists, dermatologists, physical therapists, bariatric and metabolic specialists, and radiologists.

https://lnkd.in/gYnrFqH4

American Lipedema Association
Lipedema World Alliance

12/09/2025

I will be a guest panelist on this month's Lipedema Patient Roundtable, hosted by Lympha Press. I'd love for you to join us. I've found the Roundtable to be a great place for connection and support.

September is packed with opportunities to connect and learn! Join us for our monthly clinician and patient Roundtables, plus a special Research Roundtable featuring Dr. Leon Straub in conversation with Dr. Karen Herbst. Together, they’ll explore findings from their recent study on the molecular hallmarks of .

Our virtual events are free to attend, with replays available if you can’t make it live. Register today at linktr.ee/LymphaPress!

10/09/2025

Thank you Lipedema Foundation for making this a free course! Get that info out there! American Lipedema Association

Physicians, Lipedema remains underrecognized despite affecting millions of women worldwide. Lipedema Foundation is pleased to partner with OMA to offer CME* credit (available for MD and DO designations) for Unmasking Lipedema in Obesity, presented at the 2025 Obesity Medicine Association Conference.

This CME session shares:
- Diagnostic tools to identify Lipedema earlier
- Effective approaches to management and care
- Common barriers patients face in accessing treatment
- Insights from a patient advocate on lived experience

Request the CME-accredited version here: bit.ly/4fJIz2g
Not a physician? Watch the full session here: bit.ly/4fJIziM

*1.00 AMA PRA Category 1 Credit™

09/09/2025

Please Share Widely:

📣 Action Alert for the Lipedema Community!

The CDC ICD-10 Committee is reviewing lipedema codes again, and YOUR voice matters. Having an ICD-10 code means recognition, better research, and access to care.

✉️ ACTION: Send an email to [email protected]
by October 9, 2025, urging them to implement ICD-10 codes for lipedema.

👉 Use this sample letter to make it quick and easy: https://americanlipedemaassociation.org/wp-content/uploads/2025/09/Letter-to-ICD-10-Committee-Supporting-Lipedema-Codes-September-2025.docx

Together, we can make history. 💜

American Lipedema Association Lipedema World Alliance LipoSuction for Lipedema Lipedema - The Disease They Call FAT Lipedema Education

05/08/2025

Most people think of lipedema as a condition that only affects women, but new research is proving otherwise.

A recent study from Brazil followed five men diagnosed with lipedema, all showing the same hallmark signs seen in women: symmetrical fat accumulation in the legs, sparing of the feet, pain, and easy bruising. Many had endocrine disorders, and one tested positive for HLA-DQ2 and HLA-DQ8 - markers linked to gluten sensitivity.

With targeted diet changes, low-impact exercise, and in some cases medication, every patient saw improvements in just a few weeks. This is powerful evidence that lipedema in men is real, underdiagnosed, and treatable.

Read the full study here: https://pubmed.ncbi.nlm.nih.gov/40761995/



American Lipedema Association Lipedema Foundation Lipedema CanadaTalk Lipoedema Lipoedema UK Lipoedema Australia Lipedema Sisters USA CBS News NBC Men's Health

30/07/2025

💜 Save the Date 💜
September 13, 2025 – The American Lipedema Association is hosting its very first in‑person and virtual Advocacy Planning Meeting in St. Louis, MO. Join us for a full day of empowerment, community-building, and strategic planning to advance lipedema awareness and support initiatives. Whether you’re local or logging in online, your voice matters!
📍 St. Louis, MO & Virtual
🔗 Hosted by the American Lipedema Association
🙌 Advocacy + Community + Action

Americanlipedemaassociation.org for more information

28/07/2025

🆕 New Podcast Episode Alert! 🆕 This is new info so I'd love for you to share it in your lipedema groups.

Did you know that according to a study published July 14, 2025, 78% of people with lipedema experience kinesiophobia—the fear of movement?

This week on Legs Like Mine: The Podcast, we’re diving into a powerful new study that uncovers just how common this fear is, and more importantly, how we can overcome it.

🎙️ We talk about:

Why kinesiophobia shows up in lipedema

How it impacts our health and daily life

Real, gentle strategies to help you move past the fear (without pushing your body too hard)

This episode is all about reclaiming your confidence and learning to move in ways that support healing, not pain. Whether you’re just getting started or need a little encouragement to keep going, this one’s for you.

👉 Listen now: https://youtu.be/ZnUEMf-NR2E, or on Spotify or anywhere you get your podcasts!


The Lipedema Journey Lipedema World Alliance Lipedema Foundation American Lipedema Association Lipedema Sisters USA Talk Lipoedema Lipoedema UK Lipoedema Australia

Research source: Kasap Z, Türköz MD, Keleş B, Çilesizoğlu Yavuz N. Unveiling kinesiophobia: A hidden challenge in women with lipedema. Phlebology. 2025 Jul 14:2683555251360606. doi: 10.1177/02683555251360606. Epub ahead of print. PMID: 40660631.

Welcome to Legs Like Mine: The Podcast — where we explore lipedema from a patient’s perspective, break down the latest research, and share real-life experien...

28/07/2025

I’ve been using a massage gun to help manage some of the fibrotic areas on my legs, and it’s made a real difference in how I feel. This is a relatively inexpensive tool that really helps target tension and inflammation. I wish I'd known about them earlier, before I'd tried all kinds of little inventions that left me bruised up and a few dollars shorter than I was before I'd tried them.

For those of us dealing with lipedema or lymphedema, anything that helps improve circulation and promote lymph flow is worth looking into. I’ve found this especially helpful for softening areas that feel dense or painful.

One thing I didn’t realize until recently; it’s FSA and HSA eligible. If you have a health savings account, you might be able to use it to cover the cost.

Here’s the link at one model from the "best PTs on the Internet" if you want to take a look: https://amzn.to/456WbiZ

25/07/2025

LIPEDEMA BREAKTHROUGH?

We've been waiting on a GLP-1 study!

A brand new study out of Italy just gave us *real hope*.

Five women with lipedema and insulin resistance were treated with a once-weekly injection of exenatide, a medication in the same GLP-1 family as tirzepatide and semaglutide.

✅ Pain decreased
✅ Tissue improved
✅ Fat thickness reduced (confirmed by ultrasound)
✅ Even women who *didn’t lose weight* saw real results

This might be the first published evidence of a GLP-1 medication showing promise in treating lipedema - not just weight, but symptoms, pain, and fat tissue behavior.

As someone living with lipedema, this feels like a moment worth celebrating. It’s early. It’s small. But it’s real. And this confirms what many of my lipedema ladies have been saying.

🧬 Read the full study here:
👉 [https://www.mdpi.com/2039-7283/15/7/128]

💬 Would you try a GLP-1 drug if it helped your lipedema symptoms? Or are you already, like me?




Lipedema World Alliance American Lipedema Association Lipedema Foundation