Everyone is unique, and so, in some ways, is the personal story of everyone who has lymphedema. Mine, however, is more uncommon than most such stories, for I have primary lymphedema. I don’t even know how long I’ve had it, for I have no memory of seeing, as a child, the outline of the bones, veins and tendons in my lower extremities. Maybe I did, and simply forgot it such a long time ago that those earliest views of my feet, ankles and lower legs disappeared from my mind.
Lymphedema became a serious and frightening problem for me one afternoon in December 1961, striking out of the blue with terrible pain (but no swelling) in my right ankle, followed the next morning by severe-yet painless-swelling, inflammation, blotches and streaks in the entire right lower extremity from the shin down. Our doctor was baffled, for I hadn’t done anything to it, and, while its appearance made it plain that I shouldn’t walk, I could. He ordered me to bed for the duration of my Christmas and New Year’s vacation: no playing in the snow, no ice-skating, no anything other than bathroom privileges. I was a 10-year-old and a lover of winter. Nothing made me happier than spending hours on the ice and in the snow. It was not a pleasant vacation. Neither were the three weeks that followed it, with an ankle-to-knee cast on the leg, courtesy of the local orthopedist, who was as baffled as our family doctor, and hoped the cast would eliminate or at least reduce the swelling. When he removed it, I broke down in shameless, angry tears: I had made him promise me it would work, and it had done no good at all.
Somehow the swelling subsided on its own—for a time—but by late winter it was back, and as I grew it became worse, eventually affecting my left leg and foot as well, and coming complete with unsightly, painful infections that made my skin glisten, ooze, reek and stick to my clothes and sheets. Fortunately I’ve never been heavy for any great length of time; in fact, I’ve been slim almost all my life, due to a combination of genes and very hard work. Common sense and experience told me that any extra weight would exacerbate the problem, and that eating right and wearing good, supportive shoes would help. That worked out…sort of…for a while…but eventually, whatever the problem was—and even as a child I knew it plagued both my father’s mother and his older brother—got completely ahead of me. In August 2002, a few days after skinning a toe in a well-kept hotel swimming pool, cleaning the injured digit, disinfecting it and bandaging it, I ended up in the emergency room with cellulitis in my entire left leg.
For more than 40 years by then, I had been told to “just live with it”—whatever “it” was. Once, around 1975, a doctor told me it was lymphedema. After spelling and describing it for me, he told me there was no treatment for it. (At the time, there wasn’t in the States. Had he told me what had been developed in Europe decades earlier, I’d have asked him for directions to the nearest airport.) Other than that, all I got was “it’s all in your head” and “quit whining.” To this day, many people who actually have primary lymphedema (mine is called lymphedema praecox, meaning that it develops in childhood, adolescence or early adulthood; or Meige’s disease, for Henri Meige, the French physician who first described it in the 19th century) are given the same response. Some are erroneously diagnosed with such diseases as rheumatoid arthritis, and go on to have multiple bacterial infections similar to the one I had eight years ago. Some such individuals ultimately succumb to one of these infections. This happened to the mother of someone I know.
I’m fortunate that in September 2002, I was finally able to get a correct diagnosis and begin treatment with CD—but I have at times had to fight to get it covered by my insurance, or to get compression garments, sleeves and boots in a timely manner after they’ve been ordered by a therapist. On one occasion I contacted the Philadelphia and Washington offices of Senator Arlen Specter, and got the results I needed. This treatment does NOT offer what would be termed a remission of symptoms (i.e. symptoms don’t disappear), though it does offer significant improvement in a patient’s health, mobility, independence and ability to work. It’s fiendishly time-consuming; for many patients, even with insurance, it remains very expensive. It doesn’t free patients from the need to protect the affected area(s) of the body from injury, heat and sunburn. But until science develops something better, its demonstrated effectiveness and safety make it the only treatment generally accepted by professionals in the field. Depriving patients of it by depriving them of the means to pay for it jeopardizes their jobs and often their lives. I don’t know how close I came to losing my job—or even my life—but the knowledge that I could keeps me vigilant. It shouldn’t have to keep me, or any other patient, fearful that we won’t be able to get what we need when we need it.
Without this legislation, we will have to be fearful…not just of the disease itself, but also of the problem of getting it expertly diagnosed and treated—and the risk of dying because we can’t.
