LE&RN aims to raise awareness about lymphedema and lymphatic diseases
This may be the first you've heard of lymphedema and lymphatic diseases -- and that's precisely why LE&RN was founded in 1998 (under the name Lymphatic Research Foundation).
According to LE&RN, "More people suffer from these diseases in the United States than suffer from Multiple Sclerosis, Muscular Dystrophy, ALS, Parkinson's disease, and AIDS -- combined." Up to 10 million Americans are affected.
While lymphedema isn't life-threatening on its own, it causes painful and disfiguring swelling throughout the body -- caused by fluid buildup due to damage in the lymphatic system.
Primary forms of the disease are all hereditary, and patients see its onset any time from infancy through adulthood. Those who suffer from secondary forms, however, usually get the disease through an infection, a traumatic injury, surgery, cancer or even cancer treatments -- including treatments of melanoma, prostate and ovarian cancer. In fact, according to LE&RN, "100% of those treated for neck and head cancer will develop the disease."
Though there's currently no cure for lymphedema, treatments mostly focus on easing the pain and keeping the swelling down using compression. Learn more about the disease here.
The Lymphatic Education & Research Network plans to "help make lymphedema a global priority" -- predominantly with World Lymphedema Day on March 6, which was officially established as such by U.S. Senate unanimously in 2016.
See LE&RN's initiatives in photos:
While having the diseases recognized in this way was an extraordinary feat, LE&RN's work didn't end there. With the help of actress and LE&RN spokesperson Kathy Bates -- who suffers from lymphedema herself -- the Lymphatic Education & Research Network is encouraging supporters to sign a petition to ask that the World Health Organization (WHO) declare "Lymphedema: Awareness & Cures" the focus of World Health Day 2018. You can sign the petition right here.
Furthermore, in a touching tribute to a fellow LE&RN spokesperson, 8-year-old Emma Detlefsen -- who was born with lymphedema and has been in and out of hospitals multiple times -- Bates even dedicated her star on the Hollywood Walk of Fame to Detlefsen last September.
Watch the special moment at 28:00 in the video below:
When AOL Lifestyle reached out to Bates about her connection to World Lymphedema Day and her involvement with LE&RN, she told us,
"I developed lymphedema in both arms as a result of a double mastectomy almost 6 years ago. When I met with Bill Repicci of LE&RN, the Lymphatic Education and Research Network, I discovered that 10 million Americans suffer from lymphedema and lymphatic diseases. Also in four years of medical school, doctors spend in aggregate less than an hour on lymphedema and lymphatic diseases. Primary Care Physicians are a patient's first line of defense. When they fail to diagnose lymphedema, thousands of their patients suffer needlessly while the disease progresses making it much more difficult to reverse in its later severe stages. Lymphedema is disfiguring, painful and emotionally debilitating. The psychological toll is a lifelong burden, often suffered in silence. I am lucky that I received treatment early so the swelling in my arms is not so noticeable, but I am still at risk for infection and I spent some weeks in the hospital last year for cellulitis. Because of all these factors, I decided to use my name to raise awareness for "LE" as we call it. Few people know about it and that is the first step towards getting the funding we need for research. While attending a symposium at the National Institute of Health (NIH) I learned that research on the lymphatic system could not only lead to a cure for lymphatic diseases, but one day may unlock the mysteries of AIDS and diabetes, heart disease and cancer metastases. This knowledge has strengthened my resolve. I am so grateful that World Lymphedema Day will spread the word and that those suffering with lymphedema and lymphatic diseases will take heart and realize that someone is fighting for them, that they are not alone and that children like Dave McDowell's little girl, Colette will find a cure in the very near future."
In addition to Bates' awareness efforts, U.S. Senator Kirsten Gillibrand has recently begun spearheading an effort (begun by Senator Chuck Schumer) to secure $70 million in NIH research funding dedicated to lymphatic research.