Drs Rockson & Keith share an overview and abstract of our paper on case definitions. (8 minutes)
Drs Rockson & Keith share an overview and abstract of our paper on case definitions. (8 minutes)
“I knew my legs were larger than they should be. They just didn’t match the rest of my body. No matter what I did, diet &exercise, nothing seemed to work.”
~Cherity, Stage 2 Lipedema
“Finding out I have lipedema was more of a relief, it wasn’t a scary thing at all. I knew what I had and all I had to do was figure out how to live with it.”
~Nicole, Stage 2 Lipedema
“An estimated 17M women in the US struggle with lipedema, and most don’t know it. Awareness, education and research are top priorities.”
~Robin, Stage 1 Lipedema
Lipedema is a fat/lymphatic disease involving abnormal fat deposition resulting in pain, immobility, and lymphatic disturbances. With obesity reaching epidemic proportions and anti-fat bias prevalent in healthcare, it becomes critical that patients are correctly diagnosed and that resources are invested in understanding this disease and how it can be treated.
Lipedema primarily affects women. It initiates at times of hormonal disturbance, puberty, pregnancy, peri-menopause, and with gynecological surgery.
Lipedema Project Inc. is a nonprofit 501(c)3 organization that provides extensive offerings of research, resources, and expertise to individuals with lipedema and the providers who care for them. Mark L. Smith, MD, FACS partnered with Catherine Seo, PhD and together they founded Lipedema Project in 2014 to fill the need for rigorous science to understand, define, & treat lipedema.
They sponsored and produced the First International Symposium on Lipedema – Setting the Research Agenda for Lipedema: Steps Towards a Cure held in April 2015 in New York City. The renowned documentary, Lipedema – The Disease They Call FAT, premiered during this symposium and has now been viewed over 4 million times, raising awareness about lipedema.
LIPEDEMA PROJECT’S MISSION: Raise awareness through advocacy, education, and research to improve women’s lives with lipedema and related disorders.
LIPEDEMA PROJECT’S VISION: Be the voice for women living with lipedema.
All proceeds to go to support the work of The Lipedema Project, Inc.
In 2024, Lipedema Project is teaming up with experts worldwide to release the first comprehensive textbook on lipedema for clinicians.We invite your support for this major project. Your contribution helps bring publications to clinicians so they can effectively diagnose and treat lipedema.
SUPPORT THE TEXTBOOK DONATION
Your generosity, no matter how big or how small, is greatly appreciated! Those who contribute $100 or more will receive an electronic copy of the book: Lipedema-Principles and Practice of Diagnosis and Treatment, when it is available in early 2025.
Catherine Seo, PhD
Catherine Seo, PhD
Founder & CEO, The Lipedema Project
Catherine Seo, PhD is the producer and director of the documentary The Disease They Call FAT. When confronted with almost certain immobility and complications from misdiagnosed lipedema, she traveled the world interviewing other patients, doctors, surgeons and experts looking for answers. The documentary is this story.
Her research is focused on empowering women who experience the distortions of body image as represented in the media applying self-compassion and other meditation techniques. Catherine holds a doctorate in Media Psychology and is the Founder and Director of Lipedema Simplified, LLC.
contact: [email protected]
Leslyn Keith, OTD, CLT-LANA
Leslyn Keith, OTD, CLT-LANA
President, The Lipedema Project
Leslyn Keith, OTD, CLT-LANA is President & Director of Research for The Lipedema Project, an instructor in lymphedema therapy for Klose Training and Consulting, and has a private practice in lymphedema/lipedema therapy.
She has completed research and published about lifestyle change, including a ketogenic way of eating, for participants who were diagnosed with lymphedema and obesity. She recently published the book The Ketogenic Solution for Lymphatic Disorders.
Leslyn has a doctorate in Occupational Therapy and has been treating lymphatic disorders since 2000.
contact: [email protected]
Susan O’Hara
Susan O’Hara
Executive Director, The Lipedema Project
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Susan brings a wealth of experience as a visionary leader, author, and advocate with over 25 years of success in strategic leadership and project management. She is a trailblazer in the Lipedema community, founding initiatives like LegsLikeMine.com, authoring nine books on Lipedema, and advocating globally for awareness, education, and patient empowerment. Her extensive background includes:
Susan’s passion for advocacy and commitment to empowering those affected by Lipedema align perfectly with the mission of the Lipedema Project. I am confident her leadership will elevate our efforts to new heights as we continue to raise awareness, foster community, and support research and education. |
contact: [email protected]
Lisa Duerre
Lisa Duerre
Managing Director, The Lipedema Project
Lisa Duerre built her expertise in leadership development during her 20+ years as a leader in technology talent development and customer success at Synopsys and Applied Materials.
As an Executive Coach, Speaker, Facilitator, Leadership Advisor, and Podcast Host, she has helped leaders in tech build high-performing teams, avoid burnout, and be present for the moments that matter. She brings multidimensional leadership skills to our endeavors with lipedema.
Lisa is actively raising awareness for Lipedema as she discusses her journey of discovering that she’s been living with this disease, a misunderstood and underdiagnosed condition affecting as many as 1 in 11 women.
contact: [email protected]
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Life with Lipedema
“The numbness, the pins and needles, my legs are just not normal.”
~Amanda, Stage 2 Lipedema
“It just didn’t make any sense to me that I had lost so much weight, I was eating and exercising better than ever, and still my legs and hips didn’t change.”
~Lisa Marie, Stage 2 Lipedema
“People look at me and just say ‘lose weight.’ It’s not that simple. It’s not my fault.”
~Ivonne, Stage 3 Lipedema
About The Lipedema Project
The Lipedema Project, Inc. is a 501(c)3 non-profit organization devoted to increasing awareness and providing education, research, and treatment for lipedema through online and face-to-face programs and community-building.
The Lipedema Project was founded in 2014 by Dr. Mark L. Smith, MD, FACS and Catherine Seo, PhD to begin the research and treatment for lipedema, a chronic fat disorder. Lipedema is a disease involving abnormal fat deposition resulting in pain, immobility, and lymphatic disturbances. Lipedema progresses over time often developing lymphedema, a chronic condition called lipo-lymphedema.
With obesity reaching epidemic proportions and anti-fat bias prevalent in healthcare, it becomes critical that patients are correctly diagnosed, that resources are invested in understanding this disease and how it can be treated, and that patients have the support, knowledge, and options to manage these chronic conditions.
The lipedema documentary is available for viewing on Facebook, Lipedema – The Disease They Call FAT.
The book is available on Amazon, Lipedema – The Disease They Call FAT: An Overview for Clinicians.
