Abstract
When International Lymphedema (LE) Framework cochair Professor Moffatt requested that I write a forward for this dedicated issue of Lymphatic Research & Biology, it was a joyous and fitting harbinger of the future of our field. First, I reflected on a new camaraderie among organizations dedicated to the fight against LE. Then, I looked at the topics assembled in this issue of the journal and saw a diversity of research emanating from all corners of the globe.
I have often heard of LE being the “invisible” or “polite” disease. LE was a word said in whispers, if at all. Many patients were likely to spend their lives never having received a proper diagnosis. Others would be subdued into silence by a medical community suggesting it would be untoward for them to complain. Against this backdrop, there is not a week that goes by that my staff is not dealing with a patient considering suicide due to the impact of LE.
Over the years, I have delivered many lectures that attempted to unravel what led to LE being largely ignored by our medical profession and research institutions. The palpable excitement I now feel is a testament to a dramatic shift. We no longer need to look to the past for answers. Instead, every new day brings promise and potential breakthroughs as LE takes its place as a global priority.
Whereas researchers have been true pioneers in this field, their limited numbers could not usher in the desired sweeping changes on their own. Instead, progress would depend on the estimated 250 million worldwide who live with LE and who are needed to lead the charge for change. Not many years ago, Lymphatic Education & Research Network (LE&RN) was fighting for an increase in the lymphatic research budget at the National Institutes of Health (NIH). I was startled that the majority of patients who responded to us on the issue told us our efforts were a waste of time. It was this sense of hopelessness that shocked me. Others wrote to say advocacy was LE&RN's job and as patients they should not be asked to join this fight. Clearly, we had a problem. Movements looking to create seismic change in the status quo need to be led by those most affected by the issue at hand. Unless the ranks of those advocating for change grew exponentially, there was little chance of LE awareness rising above the din of a myriad of other diseases with well-organized campaigns.
How things have changed. When LE&RN was encouraged by an LE patient to establish World Lymphedema Day in 2016, we could hardly have dreamt of its future impact. This day is now celebrated globally as it galvanizes activists who no longer feel isolated and alone. There is now a recognizable face of LE in LE&RN's Spokesperson and Academy Award winner Kathy Bates. In the United States, Congress has now directed the NIH to establish a National Commission on Lymphatic Diseases. Along with this, NIH's director reached out to LE&RN to deliver a presentation on the potential impact of a new NIH research initiative on lymphatic diseases. Two years ago, the Centers of Disease Control and Prevention (CDC) did not have a webpage on secondary LE. In concert with LE&RN, one was created. In September 2021, they announced that LE&RN was awarded a 3-year National Lymphedema Awareness grant. This grant was one of only four awarded among all eligible chronic diseases that currently do not have dedicated programs at the CDC.
Cementing my belief that we have turned a corner is my seeing an impassioned patient community. This time, when we asked our members to write letters to the director of NIH, they responded in droves—and every letter was answered by NIH. Silence is a thing of the past. Hope fills those who once quietly downplayed the impact of their disease. One clear message is that there is no such thing as a “mild” case of LE that is unworthy of the utmost attention and care. Yes, some cases are more severe than others, but all cases tragically impact both the physical and emotional well-being of the person living with the disease. One other shift I have seen is that those with LE are now not only fighting for themselves, but they are also fighting for their community.
As I read Professor Moffatt's article in this journal about the importance of self-efficacy in the successful management of LE, I reflect on how far we have come. Although the psychosocial impact on those with LE has been referred to in research, I have seen those with the disease struggle for any meaningful and consistent emotional and psychological support. However, the first step to successful personal management is indeed coming to terms with LE and one's own well-being. It is only fitting that the pioneering International Lymphedema Framework should be an organization that is now ushering in this new era in patient care.