on August 29,
2013 by Lymphatic Research
Catherine Seo with Lymphatic Research
Foundation Executive Director Bill Repicci
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, www.lipoedema-simplified.org, 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
Karen Herbst, a physician, educator and fat and lymphatic disease advocate