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.
Great article. Valid point about lack of awareness. Until I had a mastectomy, I had never heard of lymphedema. Maybe each of us could start a small support group in our area to help and encourage each other!
When I started blogging it was to build awareness and understanding.. What it has given me is a chance to connect to others and that has been wonderful.. So important not to feel alone.. William makes some great points … He is a voice in the wilderness for us … But we must join in and make it louder!!
I totally agree with all your points, Helen.
Great article. I have bilateral leg limphedema. I think I’ve always had it (I think my mother and grandmother also had it), but it got worse after I had cancer & chemo. I never sought treatment until years later, after my parents died (I cared for them for 30 years and fell into caregiver’s syndrome where their care took priority). I’ve had to stop working now, and am trying for social security disability, but they’ve denied me twice and am waiting for a hearing which should be within the next 14 months (a long time to wait with very little income). There’s no guaranty they’ll approve me either as it’s hard to prove I can’t work because of my lymphedema.
Thank you for sharing this article. My 13 year old daughter has been diagnosed with primary lymphoedema (spell check does not like British English spelling). The Nurse Consultant at the Lymphoedema Clinic (in UK) told me that I probably also have primary lymphoedema. I have yet to persuade a GP to refer me to a Clinic for a diagnosis. I do think that those with lymphoedema will have to “stand up and be heard” to promote greater awareness and achieve better support.
Thank you for sharing this article! I have primary lymphedema in my right leg (diagnosed 13 years ago) and only started sharing my story via my blog about a year ago in an attempt to connect with other patients with lymphedema. What I have noticed in talking with others is that these points that Repicci talks about are very prevalent. One which angers me the most is that the medical profession downplays lymphedema and its affect on a person’s life. One cancer survivor I recently corresponded with said that she would’ve rather died from cancer instead of live the rest of her life with lymphedema! She was never warned by her doctor of the risks of her surgery and feels like her doctor doesn’t care. She currently has no resources or support near her to help her manage her lymphedema. This has to change. It has made me much more motivated to raise awareness and find a way to make our voices heard.