It is not entirely uncommon for us to come across online content from various sources of media and try to create an educational opportunity from it, since it’s a conversation that’s already started. Any opportunity to raise awareness for LE is a good one.
Recently a group member, Susan, noticed a Lymphedema article posted by The New York Times™ entitled Traveling in Vietnam, His Leg Swelled Terribly. Had He Caught Something? She was so moved by the piece that she decided to write a letter to the editor. However after submitting it, she learned that she had to shorten it due to character limitations which was disappointing.
I’m definitely not the NYT or even a professional writer, but I thought her letter was eloquently written. I felt her full version needed to be posted publicly within the LE community, so I extended the opportunity to share here on my blog. What Susan probably did not know is that I have a double row of eyelashes and Lymphedema Distichiasis, which was the entire focus of the article as a medical mystery. In responding to NYT, she was also speaking up for me too.
Susan’s action is a great example of how to let publications know that you, as a loyal subscriber or follower, care about LE information presented by them and how you can champion LE for others.
As someone with secondary lymphedema, I was pleasantly surprised to find this condition spotlighted in the latest “Diagnosis” column. As a regular reader of the column, I always enjoy the medical mysteries and their resolutions.
What troubles me is the implication in the article, and an actual statement by Dr. Sanders in the online comments, that lymphedema is a “rare” disease that is difficult to diagnose. In reality, an estimated 3-5 MILLION Americans have lymphedema. Approximately 10% of those cases are “primary lymphedema” — i.e., chronic swelling without an identifiable cause such as cancer, trauma, etc. Often primary lymphedema is inherited, as was the case with the patient in the column. The rest of us have “secondary lymphedema” stemming from surgery, radiation, trauma to a limb, and other causes. The course of treatment is identical.
It is an appalling fact that many doctors have no idea how prevalent lymphedema is or how to properly treat it. It is a chronic condition without a cure. However, with the help of medical professionals, patients can manage the condition through the constant wearing of compression garments, the use of mechanical pumps, very careful skin care to prevent infection, specialized exercises, and sensible diet. Even so, the disease is disfiguring and psychologically stressful. There are a few research studies underway that may lead eventually to more effective treatments or preventative measures, but research funding is scarce. Furthermore, Medicare does not cover the expensive compression garments that most patients must wear full-time.
I hope the NYT editorial team will advocate for Congress to pass the Lymphedema Treatment Act ( HR 930 / S 497 ). The LTA would go a long way toward improving the lives of the millions of people who live with lymphedema. Raising awareness, even among medical professionals, is an uphill battle. Rather than portray lymphedema as a rare and mysterious ailment, I hope the NYT will help to get the word out about this prevalent condition and advocate for better lives for those who live with it.