In an effort to raise awareness of lymphedema, Juzo invited some of our medical partners and thought leaders in the lymphedema community to share how far they feel we’ve come in helping those battling this disease and ideas for educating others.
Demand for Change
William Repicci, President &CEO, Lymphatic Education & Research Network
“Change is on the way and it will be ushered in by the activism, and indeed militancy, of those who declare primary lymphedema (LE) an international priority and refuse to take ‘no’ for an answer. We do not have to be polite. We must be fearless in shouting our collective outrage that lymphatic medicine still is largely ignored in medical schools. We cannot afford to give doctors the benefit of the doubt when they show a lack of skill in diagnosing and treating lymphatic diseases, such as lymphedema. We need government agencies and politicians to hear our demands for research funding that leads to new treatments and cures.
First, this community needs to believe it deserves real action after years of being made to feel that LE is a secondary condition that should be accepted with stoicism. Second, it is time to stop using the euphemism ‘condition’ when referring to lymphedema. It is a disease and deserves all the heightened attention we give to other disease states. Third, stoicism never changed the world. To succeed, every single person with a lymphatic disease and everyone who loves them, must enter this fight and make it known that battling these diseases is a top priority. Our collective message to all the stakeholders in this fight must be that we will not stop until the world acknowledges this and acts.”
Are We Progressing?
Joachim Zuther, Lymphedema Specialist and author, “Lymphedema Blog”
After moving to the U.S. in the early 1990s, I learned that adequate lymphedema care was not a well known part of the medical field. There were a handful of treatment centers and institutions for training healthcare practitioners in lymphedema management were non-existent. The vast majority of doctors, even vascular surgeons and oncologists, did not know what lymphedema was, or how it should be treated. Patients were told that there is nothing that could be done and that they would have to live with their swollen arms or legs.
Thankfully this situation has improved over the past decades. CDT is now recognized in the United States as the gold standard treatment for lymphedema, and healthcare providers generally do a good job in providing information on this condition. Progress also has been made in alternative or additional treatment modalities for lymphedema, such as surgical procedures and new generation intermittent pneumatic compression (IPC). Advancements in medical technologies have led to increased discussion of the role of surgical treatment, such as lympho-lymphatic or lympho-venous anastomoses and vascularized lymph node transfers. Recent studies suggest that there is a potential place for newer generation IPCs, as a beneficial adjunct treatment to control lymphedema, specifically for individuals affected by chronic lymphedema with limited or no access to medical care.
So the question if lymphedema management in the U.S. has evolved can certainly be answered with a ‘yes.’ However, continued improvement is certainly needed in areas, such as the education of physicians and other healthcare providers in the effective treatment of lymphedema, healthcare coverage for compression garments and research on the impact of early and late onset lymphedema on the psycho-social and functional health of affected patients. Many outstanding researchers, educators and individuals involved in the field are constantly working to further improve lymphedema care in this country – the future looks bright!”
Lessons Learned from a Lymphie
Veronica “Vern” Seneriz,”Lymphie” and founder of Lymphie Strong
I have had lymphedema for more than 23 years. A doctor told me in 2010 that I could forget about exercise with the exception of briskly walking for 15 minutes. This was before advances in research had been published, and as we now know, it is simply untrue. I started out slow and eased into a plan with an amazing coach.
I founded the Lymphie Strong social media groups and blog to reach people who might not otherwise have a support system, as it can be very isolating to have this disease. A courageous group of people got together with me, and I created The Lymphedema Running & Fitness Club. When I did my first 5K ever, my father, who also has LE, asked me what cause I was running for, and I told him nothing. He said that it was crazy to run for nothing, and a few days later, I said I would run for lymphedema. “Ok, I’ve got this cane,” he said. “Promise me you’ll run for me too.” I answered that, “For as long as my legs allow me, I will run for you.”
In 2017, I kicked off the #MOVETHATLYMPH Challenge Series, a platform to get moving, stay moving and commit to your lymphatic health by doing something active, every day, for at least 10 minutes, 365 days straight. We have virtual challenges throughout the year to get people around the world moving and motivating each other. If you have lymphedema, always remember that you are braver and stronger than you think. You are not alone with this disease. Try to surround yourself with positive like-minded individuals who share the same mission as you. You will be so thankful you did.
Visit Juzo’s Facebook to read more from Bill, Joachim, Vern and other advocates for those living with lymphedema.