May 24, 2016 Written by William Repicci, Epameinondas Gousopoulos, and Kathy Bates
Your doctor enters your hospital room. First, the good news is delivered. The treatment was a success. You beat cancer. As your heart soars at the news, there is a muted warning that follows. You have a significant chance of now developing a disease called lymphedema, which you will have for the rest of your life. “Never you mind, though,” the doctor says. “Chin-up. After all, your life was saved. How can one complain about a little inconvenience in exchange for your life?” However, ask anyone with lymphedema what it is like to have this disease and you are likely to hear her or him say, “Lymphedema is worse than cancer. They cured my cancer. Lymphedema is forever.”
Lymphedema is fairly straightforward. It is a swelling resulting from the accumulation of lymph fluid when the lymphatic system is damaged or fails to function as it is meant to do. It most often affects one’s extremities. There are no cures and few treatments. Up to 150 million people across the globe suffer from it—many as a result of cancer treatment, others as one of the symptoms associated with filariasis, and still others will find that they have a genetic link to the disease that can lead to the onset of symptoms at birth or even much later in life.
So, how does lymphedema fit into a conversation about “well-being,” a term that asks us to quantify just how well our life is going. General well-being measures might include physical health and the absence of pain, the ability to perform those tasks that one loves and a sense that one is valued within their community. Without those basic qualities of life the physical limitations of lymphedema wear away at one’s joy. Patients feel further isolated from well-meaning friends who can’t comprehend what sufferers are going through.
A life with lymphedema means daily treatments that can last for hours. It means wearing expensive compression garments, often not covered by insurance, uncomfortable in warm weather and unfashionable all year round. It could mean one needs to use a pneumatic pump to reduce swelling and that a therapist will be needed to maintain health through manual lymph drainage. It means accepting the fact that the slightest cut on the skin might result in a bacterial infection called cellulitis, which may require occasional trips to the emergency room to avoid going into toxic shock. Aside from ongoing pain, clothes will no longer fit, one’s romantic life will be turned upside down and because high altitudes exacerbate the swelling, the adventure of air travel now raises only the fear of further physical trauma. Many sufferers report constant pain. All know ongoing discomfort as they carry extreme excess weight on one side of the body that isn’t symmetrical with the other limb. Routine joys like sports, gardening, going for walks, and even the wearing of one’s wedding ring, may have to be abandoned altogether.
Along with the physical ramifications of lymphatic disease and lymphedema, those with this disease report suffering the daily psychosocial trauma from a society that simply doesn’t understand the nature of disease. Feeling mocked and ostracized, a high incidence of patients report self-loathing, depression and suicidal thoughts.
In the United States alone, up to 10 million people suffer from lymphedema. This represents more patients in that country than those that suffer from Multiple Sclerosis, Muscular Dystrophy, AIDS, Parkinson’s disease and ALS—combined. Yet most people have never heard of it and little is invested in its cure. Too often presented to patients as simply an unfortunate side-affect of cancer, those who need to be the advocates of change have remained mostly muted.
However, this is changing. With NGOs such as Lymphatic Education & Research Network, patient advocates are making their voices heard—and both politicians and funding agencies are listening. The road to well-being for those with lymphedema must include new treatments and cures that relieve the suffering. In this regard, the National Institutes of Health has revealed a heightened interest in lymphatic research. There must also be insurance for the treatments that currently exist in order to relieve patients from the crushing financial burden they now shoulder themselves. And finally, a worldwide campaign is needed to educate the public and thereby reduce the current emotional suffering caused by misunderstanding of the disease.
A strong component of one’s well-being is feeling a psychological sense of community. This leads to a state of empowerment, which inspires the action that leads to change. The days of suffering in silence are coming to an end. With the United States Senate and other countries establishing March 6th as World Lymphedema Day, a global movement is afoot and revolutionary change in the quality of life of lymphedema patients will inevitably follow.
About the authors: William Repicci is the Executive Director of the Lymphatic Education and Research Network (LE&RN), Epameinondas Gousopoulos is MD/PhD researcher at the Swiss Federal Institute of Technology Zurich working on lymphedema treatment and Chair of LE&RN Europe Chapter, Kathy Bates is an Academy-Award-winning actress, lymphedema patient and spokesperson for LE&RN.