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'Light it up for Lymphedema': Unexplained swelling might be diagnosable, treatable disease

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Mon, Feb 17th 2020 06:10 pm
Niagara Falls is aglow in teal to mark World Lymphedema Day on March 6, 2018. The Falls and sites across the state again will be illuminated teal this March 6 to mark World Lymphedema Day 2020. (Photo by Patrick McPartland)
Niagara Falls is aglow in teal to mark World Lymphedema Day on March 6, 2018. The Falls and sites across the state again will be illuminated teal this March 6 to mark World Lymphedema Day 2020. (Photo by Patrick McPartland)

By Lisa A. McPartland

Supporting Member

LE&RN New York Chapter

For the past three years, I've organized the “Light it up for Lymphedema” campaign for the New York State Chapter of the Lymphatic Education & Research Network (LE&RN). The campaign encourages sites around the state and Canada to glow in teal each March 6, World Lymphedema Day, to raise awareness of lymphedema (LE) and lymphatic diseases (LD), chronic swelling conditions that have no cures. If left untreated, LE and LD can lead to deformities, infections and death.

Since 2008, I have suffered from secondary lymphedema, which was a side-effect of surgery I had to cure cervical cancer. It took three years, but I finally received a proper diagnosis for the unexplained swelling in my left leg. That leg still is noticeably larger than the right one, but with treatment I have been afforded a better quality of life.

During the past holiday season, I struggled with a bit of guilt. I know so many people who have been touched by cancer, including my husband, who joined the list of survivors in 2019. So many have lost their cancer battles. Also, my family was missing two very important people at the table: my father, who died in 2017 due to a heart attack, and my brother, who passed in 2016 due to a substance use disorder. In December, I was planning my "teal" email reminders to owners and operators of landmarks with illumination capabilities, but my heart was not fully into it. I tormented myself. "So what if your leg is deformed? At least you are alive. Shouldn't that be enough?"

Now that I've had a few weeks to think about this, I know the answer is a resounding, "No!" Sure, I'm ecstatic to be alive, but that does not mean that I have to accept that there is no hope for a cure for the disease that replaced my cancer. It may not be in my lifetime, but maybe getting the word "lymphedema" out into the mainstream and turning everything I can teal will lead to a spark in some doctor's mind that leads to remedies. Or prompt others suffering from unexplained swelling to renew their search for diagnoses and treatments. Or encourage those suffering not to take "nothing is wrong with you" and/or "you're obese" for answers.

Maybe these teal illuminations will light the path to further awareness, research and cures.

For more information on LE and LD and to find the full list of illuminated landmarks, visit lymphaticnetwork.org/WLD.

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