About the Lipedema Project
The Lipedema Project started as a collaborative partnership between Mark L. Smith, MD, FACS, Director of the The Friedman Center for Breast and Lymphatic Surgery at Northwell Health in NY, and Catherine Seo, PhD, founder of Lipedema Simplified, LLC, and a lipedema patient, advocate and filmmaker in Boston. The Lipedema Project is a comprehensive transmedia program to increase awareness and provide education, research, and treatment for lipedema. With obesity reaching epidemic proportions and anti-fat bias prevalent in healthcare, it is critical that patients are correctly diagnosed and resources are invested in understanding this disease and how it can be treated.
The Friedman Center is practice and research home of co-founder Mark L. Smith, MD, FACS, and is committed to providing education and funding research to identify treatment and a cure for lipedema. Lipedema Simplified, LLC chronicles co-founder Catherine Seo’s personal journey with lipedema, and produces media and other resources for patients and healthcare providers to raise awareness about lipedema and its treatment. The Lipedema Project uses its Ambassador program to raise awareness around the world in countries such as Canada, the United Kingdom, Australia, New Zealand, Spain, the Netherlands, France, Germany, Ireland, Switzerland, Turkey, Ghana, Cyprus, Sweden, South Africa, the United Arab Emirates, and the Czech Republic, as well as across the USA.
Drs. Smith and Seo have collaborated to bring together healthcare professional and patient populations to identify and solve the issues presented by this little-known fat disorder. This unique and cutting-edge approach has led to the documentary film, The Disease They Call FAT, the First International Symposium on Lipedema, CME courses live and online, a global community of patients supporting one another, and an upcoming book on lipedema authored by the leading experts worldwide.
Thank You Mark L. Smith, MD, FACS
Mark L. Smith, MD, FACS is System Vice-Chairman in the Department of Surgery, Director of Reconstructive Oncology for Northwell Health Cancer Institute, and the Executive Director of the Friedman Center for Breast and Lymphatic Surgery at Northwell Health in New York. He is an expert in the field of cancer & lymphatic surgery.
In 2013, Mark L. Smith, MD, FACS stepped forward to champion education for lipedema and lymphedema. Partnering together, physician and patient & advocate, we founded and co-directed the Lipedema Project to raise awareness with patients and providers. His contribution laid the groundwork for building a worldwide community that continues to grow today.
Dr Smith’s contributions include directing the 1st International Symposium on Lipedema – Setting the Research Agenda for Lipedema: Steps Towards a Cure. As part of the symposium, a companion Think Tank with physicians, surgeons, scientists, researchers, advocates and patients together set the stage for the agenda for lipedema research. Additionally, we produced the documentary film, Lipedema-The Disease They Call FAT and as part of a team of experts begun at the Think Tank, co-authored the book Lipedema-The Disease They Call FAT: An Overview for Clinicians.
The Lipedema Project’s success in supporting women worldwide is a function of Dr Smith’s generosity and vision. Dr Smith will now serve in an advisory capacity as Medical Advisor to the Lipedema Project while I now step into the role of Director (see below for the beginning of another big announcement!). The Lipedema Project continues to grow and expand guided by the vision set by its early founders, me and Dr Smith.
What sets Dr Smith apart from his peers is his forward thinking and innovative spirit in creating change within the healthcare system. His current focus is creating a comprehensive center for women to receive compassionate and highly skilled care for breast cancer reconstruction.
THANK YOU Dr Smith, on behalf of the thousands of women worldwide who have found answers and are now a part of this lipedema tribe, and those who will continue to join us.
About Catherine Seo, PhD
Catherine Seo, PhD is the Co-Director of the Lipedema Project and Founder and Director of Lipedema Simplified, LLC. She is also the producer and director of the documentary The Disease They Call FAT. When confronted with almost certain immobility and complications from misdiagnosed lipedema, Dr. Seo traveled the world interviewing patients, doctors, surgeons, and experts and developed the film from her findings. She holds a doctorate in Media Psychology. Her research has been focused on empowering women who experience distortions of body image represented in the media by applying self-compassion and other meditation techniques. She is currently working on a book about lipedema and in partnership with Dr. Smith is developing a series of online courses for patients and healthcare professionals.
After almost thirty-five years spent struggling with weight issues, Catherine Seo, PhD successfully maintained a 140-pound weight loss for over twenty years. The secret to her success was consistency: she regularly attended self-help groups and ate a structured diet that included weighing and measuring her food from a healthy low carbohydrate food plan each day.
Starting in 2003, during peri-menopause, Catherine slowly began regaining weight, especially in her hips and thighs, but also in her upper arms. Her lifestyle hadn’t changed at all, except that she was making more restrictive food choices that seemed to have no effect. She developed a painful condition that affected her mobility. She had difficulty walking. Despite seeking answers from a number of specialists, she was misdiagnosed. Knowledge about lipedema was almost non-existent in the US at that time. Surgery was recommended and she had five surgeries during 2009-2011, which resulted in significant complications.
Catherine’s fifth surgery resulted in surgically induced lymphedema, which caused fluid retention and swelling in both of her legs and arms. The surgery also worsened her still undiagnosed lipedema. During this time she plummeted into despair. Catherine was accustomed to blaming herself and her weight, so when her surgeon did the same, she agreed on a deep level: “This must somehow be my fault.”
However, she continued to look for answers. Through personal research, she discovered that she was a classic textbook case of the disorder lipedema.
When she realized that she was not to blame, she became committed to being her own advocate. Fortunately, her Primary Care Physician (PCP) supported and worked with her to understand her condition and its symptoms. Catherine created Lipedema Simplified in 2013 as a way of sharing both her journey and her research with other women who might be unknowingly suffering from lipedema.
As a Media Psychologist, she explores and researches women’s empowerment, and specifically how women’s lives are deeply influenced by our cultural and media distortions of women’s body image. As a lipedema patient and advocate, she has connected with a community of women worldwide who support one another. These experiences are teaching her to stand firmly for patient rights that are all too often overlooked or even dismissed.
Catherine discovered a sense of freedom and liberation when she found the answer. Lipedema is a fat disorder, and it’s a disease. If you have lipedema, or think you might have lipedema, above all else, Catherine wants you to know: “It’s not our fault.”
Catherine shares her story. From 2013 London Symposium of Lipoedema UK with Dr. Peter Mortimer: Lipedema & Treatment Options: Liposuction, Process & Results
About The Lipedema Project
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 that can result in pain, immobility, and lymphatic disturbances. Lipedema progresses over time often developing lymphedema, a chronic condition called lipolymphedema.
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.
Currently, 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 building community.
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.