To recognize World Lymphedema Day, a Renown nurse shares how she manages her lymphedema. We also asked a Certified Lymphedema Therapist (CLT) about the causes and treatments of the disease.
This week saw events happening globally in recognition of World Lymphadema Day. What happens during this annual event? According to the Lymphatic Education & Research Network, “WLD is an annual advocate-driven celebration. This is our opportunity to educate the world about the extent of this global ‘lymphedemic.’”
To learn more about lymphedema and why it needs a world “day” in commemoration, here are some common questions and answers.
First, what is lymphedema?
Lymphedema is an abnormal collection of fluid that collects just beneath the skin. The fluid comes from the lymph nodes, which make up a network of tissues that help the body get rid of toxins, waste and other unwanted substances.
According to Abigail Sargent, PT, CLT, this collection of fluid causes swelling, usually in the arms or legs, but can happen in other areas too. It can also cause discomfort, restricted movement and may increase risk of infections.
While lymphedema affects each person a little differently and swelling can vary, Amy Schler, a Renown nurse in the surgery department, shares how it affects her.
“Lymphedema is painful from my perspective,” she said. “Any change in elevation — like driving over the pass or flying in an airplane — causes my leg to greatly increase in size.”
But she encourages those experiencing lymphedema symptoms to talk to their provider as soon as possible. She notes they can perform examinations and make referrals to specialists like Sargent.
“The sooner a patient is seen in the beginning stages of lymphedema, the easier it is to manage in most cases,” Schler said.
What can cause lymphedema?
Primary lymphedema is the name of the condition for those born with the disease. This is rare.
Most cases of lymphedema happen when there’s damage to the lymphatic system – this type of lymphedema (called secondary lymphedema) can result from cancer surgery if a lymph node is removed or during cancer radiation treatment if lymph nodes are damaged.
In Schler’s case, she developed lymphedema after she had skin cancer surgery with the removal of lymph nodes. She says for some patients, lymphedema might not develop for years after their surgery, but for her, it was immediate.
What are the treatments?
Although there’s no cure, lymphedema can be managed with the right care.
Sargent says that after a thorough examination to determine the extent of lymphedema, she works with patients to restore their mobility and help improve their quality of life.
“The gold standard of treatment for lymphedema is Complete Decongestive Therapy (CDT),” she said. “This consists of compression, manual lymphatic drainage, lymphatic exercise, and skin care to meet individual patient needs. And this is then followed by maintenance care.”
For Schler, she uses a compression pump at home twice daily and wears compression stockings while she works.
She says the pump has made a huge difference in her life. According to her, it has greatly reduced the swelling in her affected leg.
“I want patients with lymphedema to know that you can live a productive life and do the things you love,” Schler said. “Two years ago, my husband and I returned to Asia for a month to visit the orphanage where we adopted our daughter — I just took my pump with me. I am not embarrassed to be seen in compression anymore.”
How can those with lymphedema continue to thrive?
As a nurse, Schler said it was heartbreaking for her to stop doing bedside care because of her lymphedema. But now, she’s helping patients during the admitting process for surgeries. In fact, she says she has a renewed passion for making a difference there.
“What I found was how many patients I encountered every day in the admitting process that were also struggling, and thus my passion started to make a difference for those patients,” she said.
Schler finds herself fueled by her passion to help others with lymphedema. As such, she became involved with Renown Institute for Cancer. There, her goal is to add the disease to the care quality measures for cancer patients’ survivorship care plans. This will in turn help affected cancer survivors get referrals to see a lymphedema specialist.