William Repicci, executive director at the Lymphatic Education and Research Network (LE&RN), recently wrote an article for National Lymphedema Awareness Day titled “Shedding Light on a Lymphedemic,” and it’s definitely worth reading.
He begins the article saying how, when he was first introduced to the field of lymphatic disease and lymphedema, he was surprised by the fact that lymphedema remains so unknown in the medical community: “How was it that a disease that affected some 10 million Americans and hundreds of millions worldwide remained shrouded in such silence? As I learned that more people in the US suffer from lymphedema than multiple sclerosis, AIDS, muscular dystrophy and Parkinson’s disease combined, my confusion only grew. Most people I knew were intimately aware of these other diseases. Yet, mention lymphedema and I routinely got blank stares.”
Repicci’s point strikes close to home: I developed lymphedema as an infant due to medical malpractice, yet no one – not even my pediatrician – recognized it as lymphedema. It wasn’t until I was fourteen that my mother’s friend suggested the diagnosis, and she had only been aware of it because her father had lymphedema. (Why is it that lymphedema is such an unknown, yet so many people have it? How is that possible, especially in this day and age?)
Repicci goes on to make another excellent point: that if patients aren’t aware of the name of their disease, they are robbed of the support that comes from knowing they are not alone. “By not feeling connected to a larger group,” he explains, “the power of numbers to create awareness fails to find a voice and the potentially powerful advocacy of family and friends is muted.”
He makes the observation that the medical profession downplays lymphedema, instilling in patients that “there are worse things than lymphedema, and that suffering quietly is a noble approach.” Contrary to that perpetuating idea, Repicci cites cancer survivors that say their lymphedema is worse than their cancer: “They cured my cancer. Lymphedema is forever.”
Repicci then makes a rallying cry for the patient population to self-identify with their disease and promote dialogue on the subject, because although there are wonderful groups pioneering change in the way lymphedema is regarded – such as National Lymphedema Network, Lymphedema Treatment Act, and LE&RN – it is the people living with lymphedema whose voices must be heard. Read the full article here to see the ways LE&RN is enacting change and awareness for lymphedema, and to see what resources they have available for patients.
William Repicci’s article is an awesome piece that brings awareness to the issue of lymphedema’s invisibility, and offers ways we can change that. I urge you to read the article, share the article, talk about the article… awareness is important. Advocacy is important. Education is important.
In fact, they’re more than important – they’re necessary.
What did you think about the article and the points Repicci made? Please share them in the comments section below, and we can get a dialogue started.