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, 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 hope.”