Abstract
On March 23, 2016, Academy Award-winner and LE&RN Spokesperson Kathy Bates keynoted the first-ever patient symposium in conjunction with the Gordon Research Conference (GRC) in Lymphatics. It was my honor to moderate the session that included an introductory welcome by GRC President and CEO, Nancy Gray, an overview of lymphatic disease by Dr. Stanley Rockson (Stanford University), and presentations by four patients who live with lymphedema and lymphatic diseases. For many of the researchers in attendance, this was a first introduction to patients who suffer from lymphatic diseases.—William Repicci, LE&RN Executive Director
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When I first heard those numbers I was astounded. I thought lymphedema was mainly due to lymph nodes being removed during mastectomies. After signing on to be the spokesperson for LE&RN, I began to educate myself so that I could speak intelligently about it. The more I learn the more I find myself telling anybody who will listen what is going on. How bad it is. How nobody has heard of it. How people can wake up one morning and look down and see their leg swollen. How babies are born with it. The sense of injustice I feel is overwhelming. So many people are suffering and in too many cases, nobody is listening to them.
I have lymphedema. I developed it right after a bilateral mastectomy 4 years ago. I knew what lymphedema was because I had seen my mother's arm swell to twice its size after a radical mastectomy. With no treatment in those days, I watched lymphedema defeat her sprit. As her daughter, I was terrified I'd get it. I pleaded with my surgeon several times. “If the sentinel node is clear, get out.”
In those first couple of days while I was recovering in the hospital, I could feel strange things happening in my hands and forearms. I began to worry. At my first examination after my surgery, I learned my surgeon had felt it necessary to remove 19 lymph nodes from my left armpit and three from my right. I had a massive anxiety attack hyperventilating. I panicked and ran out of the examining room down to the street. I walked not knowing where to go. I felt betrayed. I was filled with rage and bitterness.
Later, one of my surgeons found Dr. Emily Iker. There are some doctors who can heal without touching you. At my first visit I wept about my breasts being gone and now I had to look down at a swollen arm like my mother's. How unfair it was that I would have to manage this for the rest of my life. I felt trapped in a body I didn't want to be in anymore. After I stopped, she said in her charming Eastern European accent, “My dear, you are still young. I have two patients who are over 100. One is 105. She always dresses in Chanel and everyone goes to her for stock market advice. Have a glass of champagne and begin your new life.” And so I did.
Since then I've learned that the lymphatic system unlike the blood system is an open system. Among other things it does in the body is to provide a highway for cancer cells to travel to other organs where they metastasize. So now I understand why my surgeon like many errs on the side of caution. I in no way fault his decision. I understand his focus was on curing me of cancer and God knows I will always be grateful to him for that. He is a good man and a fine surgeon.
I have LE, but in no way as severely as others I will tell you about. I had a bout with cellulitis last fall, but I got help. Right away. I have access to the best doctors and therapists. I don't have to add my name to a waiting list 2 months long before I can get treatment. I don't have to depend on a loyal friend to get me to the nearest clinic sometimes hours away. I don't worry about where I'm going to get my next set of compression garments when they wear out or how I'm going to pay for my treatments because my insurance company doesn't cover them. I can afford all of that. That means I don't have to stay up at night worrying how bad the pain's going to get before I can get help.
At LE&RN, we try to help the many people who write to us. We encourage them to “come out of the closet” so to speak. To share their stories with others who suffer and to realize they are not alone. We listen. We empathize.
In some cases, we are able to guide them to clinics for help. Dr. Stan Rockson at Stanford treats about 600 patients a year. He has a photo on the wall in his office of an ostrich with its head in the sand depicting the medical community when it comes to lymphedema. I just love that; and I hate what it represents.
Since I am a layperson, I don't understand why medical schools find it unnecessary to spend more than a couple of hours to discuss lymphatic diseases. I can't accept that doctors cannot be educated to diagnose and treat people who are suffering, to diagnose LE promptly at an early stage when it can be managed. Lymphatic diseases should be mandatory for every state's licensing examination.
GPs are a patient's first line of defense. If nothing else that is my goal. To bring attention to lymphedema so that every single doctor in this country knows what this disease is, knows how to diagnose it, and knows where to direct their patients for treatment. I want surgeons to be taught to educate their patients about the risks of lymphedema and to know treatments their patients can take preoperatively to minimize the risks and possibly prevent developing lymphedema in the first place.
Then, there are the doctors who know about lymphedema, but believe it's merely a cosmetic issue. My response to them is: Lymphatic disease affects our quality of life every day, day after day. It is debilitating and disfiguring. Sometimes we win the day with optimism. Some days it defeats us. The psychological effects of having one's life taken hostage by this disease and not taken seriously by the very doctors we expect to help us wear away our stamina to help ourselves.
Cavalier attitudes of doctors with a god complex cost patients precious time while the disease progresses and worsens. After reading e-mail after e-mail recounting the same story of medical neglect, it is my not so humble opinion that those doctors bear responsibility for the harm they have done.
At LE&RN, we are making progress. Bill Repicci, indefatigable Bill, is always on the front lines; pushing for legislation on the State and now the Federal level; pushing for research funding; getting politicians like Senator Chuck Schumer and Senator Kirsten Gillibrand to understand the severity of the disease and provide real help. Thanks to Bill getting his foot in the door our cause has begun to experience a bit of momentum, when 2 years ago that seemed impossible.
While at the NIH, I learned that the lymph system, a mystery for centuries, is no longer taking second place to the blood system. Over the last decade, researchers have begun to focus on the pivotal role the lymphatic system may play in the pathogenesis of cancer metastasis, AIDS autoimmune diseases, obesity, cardiovascular disease, organ transplants, as well as those of us suffering from cancer-related lymphedema or congenital lymphedema. Researchers may unlock a Pandora's box of cures for a host of diseases. That is good news for all of us who live with lymphedema.
At first I was blinded by the number 10 million, but behind each number is a person with a story you can't imagine happening to you. So I want to tell you about a few individuals who suffer much more debilitating forms of lymphatic disease than I do and whose stories of struggle and their triumph have touched our hearts.
Andrew Matta, a first year pharmacy student, awoke one morning in agony to find his foot and leg horribly swollen. He had no idea what was happening, only that he could no longer walk. He was bewildered how to help himself, how to stop the pain. He spent months crawling back and forth between his bed and the bathroom, researching on the Internet. Finally, he opted for experimental surgery in Italy only to be told afterward that it would be 5 years before he would know if it worked. But Andrew has a fierce optimism. He has opened his own chapter of LE&RN in Ontario, Canada. Now he shares his story with others who suffer to ignite that optimism in them because as Andrew says, “We are about to change the world.”
Marie Apodaca suffered for years while doctors told her she only needed to lose weight. One day a coworker dropped a box and the corner punched a hole in the back of Marie's calf. Instead of blood, water came pouring out. Finally, she got the proper diagnosis and over time with therapy was able to remove 35 pounds of lymph from her legs.
A Vietnam Vet by the name of John Deyo was told at the VA to put compresses on his legs. I find it incredible that the CDC coudn't help him. They sent him to LE&RN. His e-mail had a final line. PLEASE HELP ME!!!!!!!!!!!
Many LE sufferers have risen above their distress with profound messages of hope. Pearl-Ann Hinds, a young dancer, developed lymphedema in her left leg. After months of hiding her leg and her frustrations she found LE&RN's website. She decided to contribute to the cause by choreographing a dance on You Tube called “Hello World.” She says, “If I continued to hide the reality, the power to change the legs of future generations would be lost.”
We received a video from “Jake”—(sic) there are many men that suffer from lymphedema, but you will never meet them.
Steve Kelland has had the bravery to introduce himself. He has primary lymphedema from the waist down, including his genitals. Steve was a busy executive and an avid sportsman. LE effectively curtailed those activities, but by maintaining a regimen, including skin hygiene, daily/nightly compression wear, and ∼7 hours of daily therapy, Steve has persevered. He sent us a photo, which “shows me about to scale a significant mountain, in the presence of many other LE individuals .… in the Austrian Alps.” His message “is one of hope and dogged determination to put my best foot forward, in solemn realization that it will be a lengthy and uphill climb!” Steve has begun to climb our mountain with us by starting his chapter of LE&RN in Ottawa. His favorite quote is Benjamin Franklin's “Energy and Persistence Conquer All Things.”
Zalee Harris suffers terribly with swollen arms after her double mastectomy. She can't get regular treatments because the closest clinic has a very long waiting list. Her husband helps massage her, but her skin is sore and hot to the touch. It cracks in places. She finally got compression sleeves and they are giving her some relief. But when Zalee learned that our September Walk/Run was $11 short of its 30K goal, she sent the 11 dollars. She only had $42 in the bank.
Tatiana Korolkova, 28 years old writes, “I have seen a doctor here in Russia who told me the disease is not so bad since one is not dying from this. There was a doctor who called me selfish for “thinking about your self only when there are people living without legs or arms.” He told me to leave, as he doesn't like people who “cannot appreciate their happiness.” The isolation and loneliness LE has forced upon her makes her feel “that people are living their lives and I am only trying to catch up with them as hard as I can.”
Recently, Karen Bingham of Nova Scotia posted photos of herself and her bare legs on Facebook. One person said her photos should be taken down because they were “nude and undesirable.” Not to be deterred Karen publicized her treatment on Facebook and has received positive support from all over the Internet. She appeared on a Canadian TV show and is becoming an advocate in Halifax to do what she can to spread the word.
Christiana Meyers writes, “One day when I went snowboarding my ankle was sore and swollen. I was told it was a strain and to wait until the pain went away. The pain passed but the swelling continued. I left shortly after on a trip to Jamaica not knowing what the flight and heat would do. That summer after long hours in the service industry and hard work at a sculpture symposium outdoors in the heat with no compression the condition worsened. It took me two years and more health care professionals than I can count to finally learn what was going on. And some of the hypotheses were pretty ridiculous.”
Finally, Emma Detlefson, a 9-year old born with lymphedema in both legs often battles infections that cause her to be hospitalized. Nevertheless, this child has been a powerful advocate for change. Two years ago, Emma got the ball rolling for us when she appeared before the NY State Legislature to ask the lawmakers to fund a bill for research that had been languishing for 12 years. They were so moved by her appearance that one senator was heard to say, “We have to do something to help these children.”
Because of Emma, Assembly Woman Linda Rosenthal and Senator Martin Golden got the bill passed in their respective chambers. We are working with a representative of Governor Cuomo to budget the bill.
Emma said at LE&RN's walk run at the Brooklyn Bridge last fall, “I don't like having lymphedema. There's really nothing good about lymphedema. I've been getting a lot of infections this year and they hurt and make me feel really sick. Sometimes even the doctors don't know how to help me. My mom gets sad because she knows I'm sick but the doctors don't believe her, it makes me sad too. I don't know what insurance is but I want to tell them that my nighttime wraps would actually help me even though they tell mom they're not necessary. Then I can be more of a normal kid at school during the day and do therapy at night. I think till I'm about 87 I'll walk the Brooklyn Bridge until we find a cure … or maybe if I'm lucky I'll only be 14. If I can do something hard like walk back and forth across the Brooklyn Bridge maybe a smart scientist can do something hard for them and find a cure for this disease in my lifetime.”
I hope that in bringing Emma's message to you, I can inspire even one of you to accomplish her challenge.