Lipedema Patient Raises Awareness

Catherine Seo with LRF Executive Director Bill Ripicci

Catherine Seo with Lymphatic Research  Foundation Executive Director Bill Repicci

Lymphatic Research Foundation Executive Director Bill Repicci met with Catherine Seo, a professor and documentary film-maker, last week to be interviewed on the progress being made in lymphatic research and in building awareness for lymphatic diseases.

Catherine was diagnosed with lipedema, a chronic, hereditary, and genetic disorder of the adipose tissue generally affecting the legs and, in some cases, the upper arms. As lipedema progresses, patients become increasingly heavy in the lower body. The additional, expanding fat cells interfere with the pathways of lymphatic vessels, and patients can develop secondary lymphedema, a condition known as lipo-lymphedema.

While lipedema predominantly affects women, there are a few cases in men. Believed to be caused or exacerbated by hormonal disturbance, lipedema usually is triggered at puberty, but can begin or worsen during or after pregnancy, at peri-menopause, or following gynecological surgery or any surgery with anesthesia. Estimates of the incidence of lipedema vary widely, and may be as high as 17 million or 11% of the post-puberty female population. Catherine was originally misdiagnosed and underwent a series of five surgeries, which resulted in secondary lymphedema.

Catherine’s experiences prompted her to research these disorders. She discovered that both lipedema and lymphedema are often difficult to diagnose and, despite their prevalence, receive little attention, research funding, and focus. Catherine has looked at the cultural issues as well, especially in the United States, which stigmatize and blame women for weight issues. In order to help others who may suffer from these illnesses, Catherine has developed a website,, has scheduled a series of speaking engagements, and is producing a documentary, You Mean It’s Not My Fault: Lipedema – A Fat Disorder.

“I deeply hope this information can save even one person from the circuitous, painful, and difficult journey that I’ve navigated,” Catherine said. “There is hope.”

About Lymphatic Education & Research Network (LE&RN)

The Lymphatic Research Foundation is a 501(c)(3) not-for profit organization whose mission is to fight lymphatic disease and lymphedema through education, research, and advocacy. We seek to accelerate the prevention, treatment, and cure of the disease while bringing patients and medical professionals together to address the unmet needs surrounding lymphatic disorders.
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3 Responses to Lipedema Patient Raises Awareness

  1. Mary says:

    Thank you Catherine Seo for all of your information. I had previously printed an article with pictures on lipedema/lymphedema and brought it with me to my m.d. (I also have been SMO all of my life (58 years) And had RNY WLS 5 years ago and lost 200#. I have since put back on 75# and struggle every day most especially in ambulating due to severe lymphedema in both lower legs & I truly believe (not diagnosed) that it is in my abdomen area & upper thighs also. My m.d. seemed disinterested in it and just feels I need to “knuckle down”and go back to the GBS diet.
    I believe that diet will help some but without exercise it just doesn’t seem to go anywhere!
    Thank you for your diligent research. I hope others will read and gain as much knowledge as they can about this horrible disease process. Thank you so much. Mary Mc

  2. helensamia says:

    Reblogged this on My Lymph Node Transplant and commented:
    Thank you Catherine for helping to build awareness of Lymphatic disorders… And to LRF for all your work..

  3. Betty Jo Thornburg says:

    I am 74. I developed Lipedema after tubal ligation surgery and early menopause in my early 30’s.

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