Lipedema Patient
Raises Awareness
Posted
on August 29,
2013 by Lymphatic Research
Foundation



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, 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.”

Ola Winqvist is an Immunologist at the Karolinska Institute and he is very interested in Dercum's disease (DD).  He would like to understand the immune dysfunction underlying DD.  He has already evaluated people with Type 2 DD and is looking for people with Type 3 DD.  People with Type 3 DD tend to be less obese, and have larger lipomas that are painful especially on the arms, thighs, low back and abdomen.  Women also have the lipomas in their breasts and men can have them on their chests.  Dr. Winqvist has scheduled a meeting that is open to anyone with DD (Types 1-3).

Where? Karolinska Institute, Gustav V building.
When: Friday May 11th from 13.00-16.00.

There will be a reporter there as well as at least one other medical doctor interested in DD.   Please try and attend. This event will not only advance our medical knowledge of DD but also promote awareness through a newspaper article.