Questions about Lymphedema?

Home Blog Questions about Lymphedema?

As president and CEO of the Lymphatic Education and Research Network William Repicci wants to ensure patients and providers have all information on lymphedema, lipedema and lymphatic or venous disease that they need.

William Repicci is the president and CEO of the Lymphatic Education and Research Network (LE&RN), which you can visit at lymphaticnetwork.org. The organization focuses on lymphatic education and advocacy and offers extensive information on lymphedema, lipedema and lymphatic or venous disease. Repicci talked about lymphedema and LE&RN with HME Business magazine:

HMEB: What is the mission of LE&RN?

Repicci: Stanford University estimates that up to 10 million Americans suffer from lymphedema. However, a large percentage of these patients have never been diagnosed as having lymphedema and, as a result, are not receiving treatment. Here, LE&RN’s goals intersect with those of the compression industry. We are both committed to reducing suffering, and suffering is only reduced if patients are aware of their disease and being treated. So, LE&RN makes great effort to educate the population at large about what lymphedema is. Once they are diagnosed, it leads them to the compression companies, which is a gold standard of treatment.

How important is lymphedema education?

There is one thing that LE&RN can do better than most companies in this industry: educate the public. The word ‘lymphedema’ is unknown to most. This is particularly curious considering that more Americans have this disease than MS, MD, AIDS, Parkinson’s disease and ALS — combined. The takeaway here is that too often doctors are either not diagnosing the disease, or that when they do, they don’t use the name of the disease when describing it. Case in point is a doctor’s wife that I met who had had lymphedema since a child. Yet, she had only been told that she had ‘drainage issues.’ Now an adult, she had never heard the word ‘lymphedema.’ The problem here is that all the information that companies put out about lymphedema is only likely to reach those that have heard of the disease.

However, when LE&RN has its spokesperson Academy Award-winning actress Kathy Bates on CBS Sunday Morning getting therapy, over six million viewers get introduced to lymphedema. This is compounded by LE&RN’s relentless campaign to educate the masses about the word. We also have a campaign to advocate for the use of the acronym LE for lymphedema. We need to make it easier for the public at large, and loved ones of people with this disease. Every disease not named for the person who discovered it has an acronym. Only 30,000 Americans have ALS, but most know the acronym. … We also established World Lymphedema Day on March 6.

0 comments

Back to Top