I recently found two sentences related to lymphedema embedded in a New Yorker article. It was so unexpected that I wanted to share it for that reason alone because the subject of lymphedema almost never shows up in the popular press. Who wants to write about a disease that is either a rare genetic anomaly or more commonly, an unintended result of cancer surgery or trauma?
“She took off her shoes and stuck out a bare foot, which, owing to lymphedema, had become swollen and gray, ‘like an elephant.’ (She no longer wears heels, and her walk is a tentative shuffle.)”
The passage describes what many people with lymphedema experience, swelling, skin changes, clothing restrictions, and constrained movement. Left untreated there are serious complications.
My only association with Wendy Williams, the American broadcaster, media personality, businesswoman, and writer, was in casually noticing that she is a member of the Honorary Board of the Lymphatic Education & Research Network (LE&RN), a preeminent national and international organization based in New York. On the LE&RN website, it says Ms. Williams announced in 2019 that she has lymphedema in her lower extremities, in addition to Grave’s Disease. She is not shy about standing up to be counted about her physical struggles.
The snippet in the New Yorker helps illustrate the havoc that living with this chronic disease can cause. Her story obviously resonated with me. I am grateful to Ms. Williams and Mr. Schulman for their unvarnished honesty in portraying the challenges of managing lymphedema. They have spotlighted the struggles and obstacles and small triumphs that other lymphedema patients are experiencing.
Even though medical journal articles on lymphedema are proliferating, much remains unknown about the disease. And public awareness about the condition remains lamentably low. So it’s important that people speak out about lymphedema, in discussions with friends and co-workers, and in the media, with the goal of raising awareness and making a convincing case to policymakers and legislators for more research and better treatment.
It’s beginning to happen, and we can all play a part in moving the needle forward.
Laurie Macfadden Jones, Board Co-President, NW Lymphedema Center