May 24, 2016 Written by William Repicci, Epameinondas Gousopoulos, and Kathy Bates
Your doctor enters your hospital room. First, the good news is delivered. The treatment was a success. You beat cancer. As your heart soars at the news, there is a muted warning that follows. You have a significant chance of now developing a disease called lymphedema, which you will have for the rest of your life. “Never you mind, though,” the doctor says. “Chin-up. After all, your life was saved. How can one complain about a little inconvenience in exchange for your life?” However, ask anyone with lymphedema what it is like to have this disease and you are likely to hear her or him say, “Lymphedema is worse than cancer. They cured my cancer. Lymphedema is forever.”
Lymphedema is fairly straightforward. It is a swelling resulting from the accumulation of lymph fluid when the lymphatic system is damaged or fails to function as it is meant to do. It most often affects one’s extremities. There are no cures and few treatments. Up to 150 million people across the globe suffer from it—many as a result of cancer treatment, others as one of the symptoms associated with filariasis, and still others will find that they have a genetic link to the disease that can lead to the onset of symptoms at birth or even much later in life.
So, how does lymphedema fit into a conversation about “well-being,” a term that asks us to quantify just how well our life is going. General well-being measures might include physical health and the absence of pain, the ability to perform those tasks that one loves and a sense that one is valued within their community. Without those basic qualities of life the physical limitations of lymphedema wear away at one’s joy. Patients feel further isolated from well-meaning friends who can’t comprehend what sufferers are going through.
A life with lymphedema means daily treatments that can last for hours. It means wearing expensive compression garments, often not covered by insurance, uncomfortable in warm weather and unfashionable all year round. It could mean one needs to use a pneumatic pump to reduce swelling and that a therapist will be needed to maintain health through manual lymph drainage. It means accepting the fact that the slightest cut on the skin might result in a bacterial infection called cellulitis, which may require occasional trips to the emergency room to avoid going into toxic shock. Aside from ongoing pain, clothes will no longer fit, one’s romantic life will be turned upside down and because high altitudes exacerbate the swelling, the adventure of air travel now raises only the fear of further physical trauma. Many sufferers report constant pain. All know ongoing discomfort as they carry extreme excess weight on one side of the body that isn’t symmetrical with the other limb. Routine joys like sports, gardening, going for walks, and even the wearing of one’s wedding ring, may have to be abandoned altogether.
Along with the physical ramifications of lymphatic disease and lymphedema, those with this disease report suffering the daily psychosocial trauma from a society that simply doesn’t understand the nature of disease. Feeling mocked and ostracized, a high incidence of patients report self-loathing, depression and suicidal thoughts.
In the United States alone, up to 10 million people suffer from lymphedema. This represents more patients in that country than those that suffer from Multiple Sclerosis, Muscular Dystrophy, AIDS, Parkinson’s disease and ALS—combined. Yet most people have never heard of it and little is invested in its cure. Too often presented to patients as simply an unfortunate side-affect of cancer, those who need to be the advocates of change have remained mostly muted.
However, this is changing. With NGOs such as Lymphatic Education & Research Network, patient advocates are making their voices heard—and both politicians and funding agencies are listening. The road to well-being for those with lymphedema must include new treatments and cures that relieve the suffering. In this regard, the National Institutes of Health has revealed a heightened interest in lymphatic research. There must also be insurance for the treatments that currently exist in order to relieve patients from the crushing financial burden they now shoulder themselves. And finally, a worldwide campaign is needed to educate the public and thereby reduce the current emotional suffering caused by misunderstanding of the disease.
A strong component of one’s well-being is feeling a psychological sense of community. This leads to a state of empowerment, which inspires the action that leads to change. The days of suffering in silence are coming to an end. With the United States Senate and other countries establishing March 6th as World Lymphedema Day, a global movement is afoot and revolutionary change in the quality of life of lymphedema patients will inevitably follow.
About the authors: William Repicci is the Executive Director of the Lymphatic Education and Research Network (LE&RN), Epameinondas Gousopoulos is MD/PhD researcher at the Swiss Federal Institute of Technology Zurich working on lymphedema treatment and Chair of LE&RN Europe Chapter, Kathy Bates is an Academy-Award-winning actress, lymphedema patient and spokesperson for LE&RN.
Ich habe diese Nachricht erhalten von
was mich wieder daran erinnert hat und wütend macht. Wir müssen gemeinsam unbedingt mehr bewegen für die Aufklärung, Forschung und Hilfe was Lymphatischen Erkrankungen anbetrifft. Wir betroffene dümpeln vor uns hin und es gibt kaum alternativen die für uns zugänglich gemacht werden das liegt an unser Gesundheitssystem, leider!
Das können wir so nicht mehr akzeptieren, es geht auch gar nicht das unser Leiden verniedlicht und verharmlost wird, wir müssen radikaler werden und einfordern. Ich werde mir die nächsten Tage einen Schlachtplan überlegen und ich hoffe auf eure Unterstützung, nur gemeinsam können wir etwas erreichen. Ich wünsche euch einen schönen Tag und alles liebe! Bis bald.
“Dear lymphedema and lymphatic disease advocate,
How often do we hear that the reason lymphedema receives so little attention is because people don’t die from it? However, we know this is not true. Lymphedema compromises health in a myriad of ways, and many of these lead to a premature death, as Lynn’s husband tells us:
Society gives its attention to a host of diseases that aren’t terminal. We value quality of life. The interminable impact lymphedema has on one’s quality of life is reason enough for it to be a national priority. However, we must also dispel the notion that lymphedema doesn’t kill. The complications of lymphedema do indeed compromise health and can shorten lifespan. Our focus has to be on finding treatments and cures and this will only happen once we dismiss all the myths that allow society to turn a blind eye to this disease. “
Most sincerely, William Repicci
Executive Director, LE&RN
Support World Lymphedema Day
Lymphedema and lymphatic disease advocates from around the world are joining together to establish the first annual World Lymphedema Day, March 6th — a day to raise awareness, take action, and celebrate our solidarity. To take part, watch the video, sign the petition, and spread the word.
LE&RN/FDRS Fellowship Awardees Announced
We are pleased to announce that a total of four postdoctoral fellowships will be awarded through the inaugural 2015 LE&RN/FDRS Fellowship Program. The recipients will include three LE&RN/FDRS Postdoctoral Fellowship Awardees and, due to the generosity of the new Lipedema Foundation, one Lipedema Foundation Postdoctoral Fellowship Awardee.
FDRS 2016 Conference
The FDRS 2016 Conference: Living with Lipedema and Dealing with Dercum’s will be April 8-10, 2016 at the Marriott St. Louis Airport Hotel in St. Louis, MO. The keynote speaker is world renowned Fat Disorder expert, Karen L. Herbst, MD, PhD. Topics to include surgical and non-surgical treatment options in managing both Lipedema and Dercum’s Disease.
Join LE&RN In Seeking Dedicated Lymphedema and Lymphatic Disease Funding
A few weeks ago, LE&RN issued a press release calling on Congress to allocate a portion of the increased NIH budget to lymphatic research. We asked all LE&RN members and supporters to reach out to Senator Chuck Schumer (pictured here standing between LE&RN Spokesperson Kathy Bates, center, and LE&RN Executive Director William Repicci, far right) and to their own representatives in Congress. Click here for contact information and for a sample letter.
Featured Expo Video: “Cracking the Compression Code”
Watch our featured Expo video from BSN Medical, “Cracking the Compression Code: Which Product is Right for Me?“
Follow LE&RN and Spread the Word
Wir wissen alle das wir noch viel zu bewegen haben. Um so mehr Menschen, auch die ,die nicht betroffen sind, bescheid wissen, um so mehr können wir bewegen. Ich danke das Lymphatic Education & Research Network für deren Arbeit und Einsatz. Alle Nationen müssen zusammenarbeiten damit Forschung und somit neue Therapie Möglichkeiten uns zur Verfügung stehen. Wir sollten das alle Unterschreiben! Ich danke euch für die Unterstützung und wünsche alles liebe.
- The World Health Organization estimates that over 150 million people worldwide have secondary lymphedema.
- The National Institutes of Health (NIH) states that the incidence of primary lymphedema could be as high as 1 in 300 live births.
- Of the 1.4 billion people in 73 countries threatened by lymphatic filariasis, commonly known as elephantiasis, 120 million are currently infected and 40 million of these patients are disfigured and incapacitated by the disease.
- The Centers for Disease Control and Prevention (CDC) warns that the incidence of secondary lymphedema among cancer survivors is between 20-40%. Lymphedema is estimated to affect up to 10 million people in the United States alone according to Stanford University. This represents more Americans than those suffering from AIDS, Parkinson’s disease, Muscular Dystrophy, Multiple Sclerosis and ALS — combined.
- The continuum of diseases impacted by the lymphatic system includes heart disease, AIDS, diabetes, rheumatoid arthritis, and cancer metastasis.
- Lymphatic diseases routinely go undiagnosed and untreated, and research is grossly underfunded.
The First Annual World Lymphedema Day™ — March 6, 2016
The time has come to mount a worldwide campaign against a Lymphedemic®. Lymphedema (also spelled “lymphoedema”) and lymphatic disease advocates from around the world are joining together to establish the first annual World Lymphedema Day. March 6th was chosen by advocates in India, Europe and elsewhere to coincide with the current recognition of this day in the United States, Canada, and Australia. The Lymphatic Education & Research Network fights lymphedema and lymphatic disease through education, research and advocacy and is proud to be the international sponsor of World Lymphedema Day.
Why We Need World Lymphedema Day
Great attention is paid to the battle against cancer. Yet, most people haven’t heard of lymphedema, which cancer frequently leaves in its wake. We hear little of the children born with lymphatic malformations or those who inherit lymphedema. There is silence on the issue of wounded war veterans, civilian casualties and others who suffer from lymphedema due to physical trauma or as a result of surgery. Too many who suffer feel alone. Too many medical professionals remain uneducated about this disease or underplay the devastating impact it has on a person’s quality of life. Too many go without the necessary therapeutic care. And this tragedy is compounded when government and private health insurers deny patients coverage for even the universally accepted treatments that this disease demands.
The World Health Organization estimates that over 150 million people worldwide have secondary lymphedema, while the National Institutes of Health (NIH) states that the incidence of primary lymphedema could be as high as 1 in 300 live births. Of the 1.4 billion people in 73 countries threatened by lymphatic filariasis, commonly known as elephantiasis, 120 million are currently infected and 40 million of these patients are disfigured and incapacitated by the disease. The Centers for Disease Control and Prevention (CDC) warns that the incidence of secondary lymphedema among cancer survivors is between 20-40%. Lymphedema is estimated to affect up to 10 million people in the United States alone according to Stanford University. This represents more Americans than those suffering from AIDS, Parkinson’s disease, Muscular Dystrophy, Multiple Sclerosis and ALS—combined. Finally, the continuum of diseases impacted by the lymphatic system includes heart disease, AIDS, diabetes, rheumatoid arthritis and cancer metastasis. Yet, lymphatic diseases routinely go undiagnosed and untreated, and research is grossly underfunded.
A Call to Action
The message from lymphedema and lymphatic disease advocates is clear. “Lymphedema and lymphatic diseases are ready to take their place as international priorities.” The days of being invisible are over. Together, we announce World Lymphedema Day to be celebrated on March 6th. Join this movement by signing the online petition. Let’s show that every country around the globe supports this cause. LE&RN and its international members are inviting patients, their family and friends, advocates, politicians and treatment practitioners from every country to make their voices heard by signing the petition to recognize World Lymphedema Day.
Together, we can change the world.
Lymphatic Education & Research Network
Founded in 1998, the Lymphatic Education & Research Network is a 501(c)(3) not-for profit organization whose mission is to fight lymphatic disease and lymphedema through education, research and advocacy. LE&RN provides valuable education resources for the millions of people who suffer from lymphedema and lymphatic disease. LE&RN fosters and supports research that can deepen the medical community’s understanding of the lymphatic system. For more information about lymphatic disease or the Lymphatic Education & Research Network, please visit www.LymphaticNetwork.org or call (516) 625-9675.
In just over three weeks, New York City will see hundreds of teal t-shirts crossing the Brooklyn Bridge for the 2015 5K Walk to Fight Lymphedema & Lymphatic Diseases.
Our goal is to come together as a community and raise $100,000 for lymphedema and lymphatic research. It’s an ambitious goal and we need YOU to make it happen!
Sign up today. Form a team, join a team, be a virtual walker (you don’t have to be in New York to participate), or support a team with a donation. Sign up on ourFacebook and Google event pages as well. Let the world know that you support the 2015 Walk to Fight Lymphedema & Lymphatic Diseases across the Brooklyn Bridge on September 19.
Our mailing address is:
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New York, NY 10016
Copyright Lymphatic Education & Research Network 2015.
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March 6, 2015, will officially be recognized as Lymphedema Awareness Day in the State of New York. New York State Senator Martin J. Golden, who has been a true friend to LE&RN and who was honored at the 2014 Walk for Lymphedema & Lymphatic Diseases, was the Resolution’s sponsor. It will be read on the floors of the New York State Senate and Assembly at the same time that Emma Detlefsen, a six-year-old lymphedema advocate, will be honored with an official NYS resolution for her efforts.
Good morning everyone. Would like to share this link today, we have to keep things moving and going in order to change the Lymphedema World. Have a nice week-end, Monica
Please take a few minutes time to watch this, very interesting and educational. Thanks to great people, and great work Lymphatic Education & Research Network.
Have a wonderful week-end everyone.
Lymphatic Education & Research Network
Hallo und guten Tag. Ich würde mich sehr freuen wenn wir hier in Deutschland, Österreich, Schweiz, Holland und Belgien usw. ALLE gemeinsam und zusammen etwas bewegen. Es gibt viel zu tun, viel Aufklärung die geschehen muss. Wir sollten uns ein Beispiel nehmen an meine Landsleute. Ich würde mich sehr freuen wenn sich interessierte melden damit wir endlich mal die Öffentlichkeit erreichen und somit Behörden, Krankenkassen, Ärzte etc. ein weg aufzeigen die wir gemeinsam gehen möchten.
Ich wünsche euch alle einen schönen Tag, Monica