by William Repicci, LE&RN Executive Director
When I was first introduced to the field of lymphatic disease and lymphedema, I was most struck by how little I knew about these diseases. Having worked extensively in the area of congenital defects and infectious disease, both in the US and Africa, how was it that a disease that affected some 10 million Americans and hundreds of millions worldwide remained shrouded in such silence? As I learned that more people in the US suffer from lymphedema than multiple sclerosis, AIDS, muscular dystrophy and Parkinson’s disease combined, my confusion only grew. Most people I knew were intimately aware of these other diseases. Yet, mention lymphedema and I routinely got blank stares. Two such moments cemented my resolve that a change was in order. In the first, a University Dean, having never heard of lymphedema, asked me to explain it. When I did, she exclaimed, “My mother has that! She had breast cancer and her arm is now severely swollen. Tell me the name again?” The second incident was talking to a doctor and his wife. After describing lymphedema, she raised her leg and said, “I have that. My doctor said it was drainage issues. What did you call it?”
If patients aren’t aware of the name of their disease, they are robbed of the support that comes from knowing they are not alone. By not feeling connected to a larger group, the power of numbers to create awareness fails to find a voice and the potentially powerful advocacy of family and friends is muted.
Adding to the dilemma is a medical profession that has too often instilled in patients the idea that there are worse things than lymphedema, and that suffering quietly is a noble approach. Yet, when I talk to cancer survivors with lymphedema, they are most likely to say, “My lymphedema is worse than my cancer. They cured my cancer. Lymphedema is forever.”
Suffering in silence results in only one thing—society’s collective yawn. Let others decide the pecking order of what is most important. Change comes when we demand it. Change comes when people don’t take “no” for an answer. Change comes when groups coalesce around a compelling cause and systematically advance their agenda in every forum imaginable.
Whereas there are pioneer groups changing this, such as National Lymphedema Network, Lymphedema Treatment Act, and LE&RN to name just a few, it remains a challenge to make headway if the patient population doesn’t self-identify with their disease or promote dialogue on the subject. We need a national education campaign that addresses the impact of lymphatic disease and lymphedema. We need substantial increases in funding for research. We need a notable spokesperson to come forward and advocate for awareness and funding. We need our politicians to become champions in this cause.
March 6th is National Lymphedema Awareness Day. In support of patients and LE&RN, the New York State legislature will read a resolution on both chamber floors acknowledging this day. In addition, they will read a resolution honoring LE&RN’s youth ambassador, seven-year old Connor Looby. The legislature will also be voting on a funding request for LE&RN’s National Patient Registry and Tissue Bank. We can also announce that LE&RN is soon to receive a $500,000 bequest from a woman honoring a brother who suffered from lymphedema throughout his life. These funds will be used for fellowships in lymphedema research. Progress is being made.
When we changed our name to Lymphatic Education & Research Network—LE&RN, it was a statement that we had redoubled our efforts to spearhead education and advocacy as well as research. As such, we will continue to expand our free live-stream symposium series featuring the world’s leading researchers and medical practitioners. We will continue to expand our new website with user friendly features such an “Ask the Expert” forum. We will continue to grow our social media, bringing you the daily highlights in the field and at LE&RN. We will use all of our human resources to advocate for the Lymphedema Treatment Act and an increase in research funding—federal, corporate, and private. Finally, we prepare to award new research fellowships this summer, guaranteeing that the best and brightest are welcomed into this field.
With funding always an issue, many of our goals remain elusive; e.g., a national hotline, lymphatic disease curriculum in medical schools, a national lymphedema education campaign, state chapters, and outreach to expand our patient registry and tissue bank. Instead, we hear how federal funding of lymphatic disease and lymphedema research is diminishing at such an alarming rate that we are in danger of losing a new generation of researchers. There is only one road to success: fearless determination by those who stand the most to gain. As we approach National Lymphedema Awareness Day, we at LE&RN call upon all those with lymphatic disease and lymphedema and all those who champion their cause to make their voices heard.
William Repicci is Executive Director of the Lymphatic Education & Research Network (LE&RN). Photo: William Repicci with NY Assemblywoman Linda Rosenthal and LE&RN Youth Ambassador Emma Detlefsen in Albany, NY, for Lymphedema Awareness Day 2014.
Update 2015-10-28. Since I first wrote this article, significant progress has transpired. Our cause now has a celebrity spokesperson in Academy Award-winning actress Kathy Bates. Ms. Bates has lymphedema following her double mastectomy and has since spoken about this issue on television, in print and at events. As LE&RN’s spokesperson, Ms. Bates recently kicked off the first lymphatic focused symposium sponsored by the National Institutes of Health in the USA. This was followed by meetings with Senators on Capital Hill and the submission of a $40-$70 Million dollar request for lymphatic research funding and an education campaign. LE&RN also has begun State Chapters offering access to resources, and support for community events and political activism. And research breakthroughs such as the successful growth of embryonic lymphatic cells at the Weizmann Institute, which LE&RN assisted in funding, shows us the promise of tomorrow. Most importantly, new hope is fueling a groundswell of advocacy. With this, we see that lymphatic diseases, lymphedema and lipedema issues are growing as national and International priorities.The USA and Canada celebrate March 6th as Lymphedema Awareness Day. Many now call for us to join together in setting one International Day to recognize this disease. Clearly, we grow stronger every day. — William Repicci