Happy World Lymphedema Day!
Lymphedema awareness has been celebrated in various communities since 1994, but today marks the second year of its official recognition by various governing bodies around the world in a movement spearheaded by the efforts of the Lymphatic Education and Research Network.
This recognition is important because it brings much-needed attention to the global fight against lymphedema and lymphatic disease — and the fight for better healthcare and improved quality of life for the millions living with lymphedema.
Awareness begets action, and at this collaborative global level, awareness spurs the advancement of research, enables proper diagnoses, and informs the development of effective treatments and access to care. Most importantly, awareness empowers those living with lymphedema and, by extension, gifts us with community.
Last year I posted a week-long series for World Lymphedema Day that covered the overall theme of lymphedema awareness and education, including an overview of lymphedema and its various treatments as well as resources for finding a therapist.
This year, I wanted to look at the international aspect of the lymphedema community, both at the patient and professional levels. It’s common for those of us living with lymphedema to feel isolated and alone, but there’s a whole world of fellow lymphies out there to support us — and medical professionals and researchers passionately working to improve our quality of life.
The Doctor is in!
For this World Lymphedema Day, I was fortunate enough to speak with one such passionate medical professional, Epameinondas Gousopoulos, MD-PhD, MSc., about the globalization of the lymphedema community, the importance of patient involvement, and his vision as chair of the Europe Chapter of Lymphatic Education and Research Network.
As a lymphedema patient and a writer, I’m always curious to know: how does one fall into the field of lymphedema pathophysiology?
He has always been interested in regenerative medicine, but according to Dr. Gousopoulos, getting interested in lymphedema was entirely coincidence.
While completing his last year of medical studies at the University of Göttingen in Germany, Dr. Gousopoulos spent three months working in a plastic surgery department. There, he saw the sophisticated microsurgeries performed to transplant lymphatic vessels as a surgical treatment for lymphedema — but he hadn’t heard of lymphedema before.
“This was my very first encounter with the disease,” he said. “And it felt really overwhelming.”
He quickly found that so much of the burden of lymphedema lies on the patients, and yet there remains so little attention given to the patients themselves. It’s this imbalance as well as the opportunity to provide patients with novel treatments that’s been Dr. Gousopoulos’s main clinical motivations, and his reason for getting into the field of lymphatic research.
“Within the six years of medical education, we — the young, trained physicians — we hear so little about the lymphatic system,” he went on to explain. “So, when I encountered lymphedema, I felt this was really an area where somebody may achieve impact if somebody focuses and works on it.”
Dr. Gousopoulos is certainly focused: with a dual education in both medicine and science, he has a background that’s afforded him a unique perspective from which to approach his research and the needs of the lymphedema community.
“I truly believe that both disciplines have shaped the way I understand the disease and opportunities possible to relieve the burden of the patients,” he explained, going on to acknowledge that an equally influential force has been his mentor, Dr. Michael Detmar.
The two worked together on a 2016 study which found certain cells in the immune system suppressed the development of lymphedema. Dr. Detmar described their findings as suggestive of a paradigm shift not only in the way lymphedema is treated, but in the approach of an eventual cure.
“He has been a person thinking far ahead of his time,” Dr. Gousopoulos said. “He critically influenced my ideas and decisions about how a researcher or clinician should see this field of work, and what should be the next steps taken so that we can have advancements in understanding the disease and potentially finding a therapy.”
Understanding the Cause
To better understand lymphedema, Dr. Gousopoulos believes physicians, scientists, and researchers must first understand the lymphatic system; they cannot effectively help the patient population if they don’t.
“We have to look in the mirror and say, ‘We understand the problem, we understand the clinical aspect of the disease, but we are lacking the knowledge to target the background of the disease,’” Dr. Gousopoulos urged. “The under-diagnosis of patients is not only because we are restricted to a very small field — I think it’s the basic problem of medical education focusing very little on the lymphatic system.”
Dr. Gousopoulos hits upon an important point, as recent research from the United States indicated that medical students are receiving roughly twenty minutes of total education on the lymphatic system over their six years of medical schooling.
“And in that case, I’m pretty sure they have talked about the lymph node, and not about the lymphatic system and lymphatic vessels, and the roles they have,” Dr, Gousopoulos clarified.
Currently, there’s lymphatic research being done in Europe that seems, in Dr. Gousopoulos’s words, “very, very promising.”
“We are starting to understand where exactly the problem is,” he said. “It will be very interesting to know what is causing the problem, not only what can be a potential treatment that might work for part of the group [of affected patients] but not for the others.”
What Dr. Gousopoulos is referring to is a common issue in lymphedema research: the differences between primary and secondary lymphedema.
“Most of this kind of work focuses on post-surgical lymphedema,” he explained. “But there is a part of the work, a part of the disease that is absolutely neglected in that context: primary lymphedema.”
Although both diseases are similar in their presentation and impaired lymphatic function, they have different triggers for their onset: “On the one side you talk about the genetic problem that results in impaired lymphatic function or impaired formation of lymphatic vessels, and on the other side you have an acquired condition that comes secondary to an injury, to an operation, to radiotherapy.”
Dr. Gousopoulos says that there’s a certain degree of overlap between primary and secondary lymphedema, but it’s difficult to apply the same treatments to both simply because primary is so much more variable in its genetic mechanisms; there are so many genetic mutations which in turn lead to different phenotypes, which eventually lead to a different disease.
Globalization of Lymphedema
Putting a disease like lymphedema into a larger framework is important to increasing awareness and urgency within global networks, and it allows for international collaboration on research and the development of new or improved treatments.
“Change on an international level is highly important,” Dr. Gousopoulos emphasized. “We live in a globalized world.”
Last summer, Dr. Gousopoulos attended a meeting of the World Economic Forum in China, an event that focuses primarily on science and technology. It proved an incredible opportunity for Dr. Gousopoulos to talk about lymphedema and LE&RN to a diverse professional audience. To really communicate the importance of the disease, he put it into a context most anyone can relate to, whether they have lymphedema or not: quality of life.
“How would your life be if you could not even grasp a glass of water because your arm is swollen?” he posited as an example. “These are the points that most people could actually familiarize themselves with. Because at the end of the day, regardless of our individual problems, we want to live a life with quality and a life with dignity.”
He stressed that it’s not only the globetrotters and decision-makers that should be made aware of lymphedema, but also our neighbors and friends. And it’s us — the patients who live with the disease — that are the best ambassadors of change.
“The challenge is to make people aware that this is a disease that deserves treatment,” he said. “It is a disease that has to be understood as a disease by a physician, by the family, and by the society. So — advocacy, education, and research are, for me, the key components for this change.”
When I asked Dr. Gousopoulos of his hopes for the lymphedema and lymphatic research communities, he took a thoughtful pause before answering.
“My hope is that there will be no need to talk about lymphedema in twenty years from now,” Dr. Gousopoulos said. “And by that I mean that my hope is that within the next years we will be able to work intensively … leading either to a treatment or to a prevention of the disease.”
Like his introduction to the field of lymphedema, Dr. Gousopoulos became involved with the Lymphatic Education and Research Network a bit by coincidence, too.
“I think the best things in life come out of the blue,” Dr. Gousopoulos laughed. “And it has to be a little bit of serendipity, a little bit of destiny.”
While at a conference three years ago in California, Dr. Gousopoulos met William Repicci, the executive director of LE&RN; he credits the efficiency of LE&RN as an organization and the leadership skills of Repicci as the inspiration for him to get involved and really make the move to bring LE&RN to Europe.
“His inspiration, his commitment, his idealism constitutes for me the epitomization of selfless contribution to a good cause,” he said. “I love the passion that [LE&RN and Repicci] show to change the perspective of lymphedema. And I thought, yes, it’s worth the effort to join forces with LE&RN and try to make an impact in Europe, too.”
Today, the European Chapter of LE&RN is based in Switzerland and is an extension of LE&RN’s mission to fight lymphatic disease and lymphedema through education, research, and advocacy.
“You need to have a more local access, and you need to have kind of a reference point,” Dr. Gousopoulos explained. “So, over time, this is what LE&RN is going to build in Europe.”
To achieve this, Dr. Gousopoulos aims to get involved with various European organizations that share relevancy with lymphedema, such as organizations focused on cancer or rare diseases, in order to develop synergies together. It’s through collaborative efforts within the community that real change can occur, both at the patient and professional levels.
“We cannot hope that we alone are going to change the world,” he said. “We can initiate many things, we can assist, we can always raise our voice — but we need to have synergies. We need to understand that we need to work together for a common project, a common cause. That’s how we can manage and bring the best outcome.”
After a pause he added: “It’s something I really do believe a lot. And if you have to start a little bit locally, you have to start with what you have within your neighborhood, city, country — and then you can try to make it more global. But start on a scale that you can handle, and you can grow. Step by step.”
Attention, European lymphies!
Do you see a physiotherapist? Do you attend a support group? Where do you buy your compression garments? Where do you receive treatment? If you’re a lymphedema patient living in Europe, Dr. Gousopoulos and LE&RN Europe want to hear from you!
In efforts to build a list of resources and get an idea of what exists in the European lymphedema community, Dr. Gousopoulos is asking that you send the European Chapter an email with your city and country, and a description of your lymphedema network.
This information will be compiled and organized on their website so patients can find treatment and support options that are locally available to them. This will be made available free of charge to anyone who needs it!
“Many things can be done on a very local level,” Dr. Gousopoulos explained. “So providing access to this local information for patients that might be from the village nearby your little city — that would be actually essential.”
Please contact LE&RN Europe by sending an email to firstname.lastname@example.org.