A series of comedy sketches on “Chappelle’s Show” in the early 2000s featured the inimitable Dave Chappelle portraying celebrities about whom Eddie Murphy’s brother Charlie Murphy shared purportedly true Hollywood stories. One of the vignettes told the story of flamboyant, hard-living R&B singer Rick James going to Eddie’s house, stretching out on his new white sofa, and grinding his muddy cowboy boots into the furniture. According to Charlie, he and Eddie laid into James, whooping up on his legs and backside. In character as James, Chappelle drags himself across the floor after the beating, yelling, “What am I gonna do about my legs?”
That is a question I have to ask myself every day, and the reason is far from funny. I have primary bilateral lymphedema of the lower extremities — a serious medical and cosmetic condition — and each day, I decide what clothes and shoes to wear and which activities I can participate in based on how well I am able to manage the swelling in my legs.
It wasn’t always this way. Although I was the kid who couldn’t wear zip-up boots because my legs were too big, no one in my family suspected that the size of my legs was due to a serious, congenital condition, and it wasn’t until I was 19 that I had the first inkling that something was really wrong with my legs. I’d been up late dancing and had had a bit of wine to drink. No big deal. But the next morning, I woke up to puffy, swollen ankles. I was surprised and a little frightened, figuring that I must have somehow mysteriously injured myself. Over the course of the day, my legs returned to “normal,” and I planned to see a doctor about what had happened when I went home from college for summer break.
I now know that the doctor I saw didn’t have a clue what he was looking at when I visited him that summer. He told me — a young woman of normal weight with a history of heavy activity in sports and fitness — that I had varicose veins. I presented to him with no swelling or protruding veins, just a story about the swelling that I had experienced one time with my ankles. His cluelessness was surpassed only by the confidence with which he uttered his diagnosis.
From then until the age of 57, I never had a formalized, empirically supported diagnosis of lymphedema. As I’ve said, I had “big” legs as a child and teen, but that was considered aesthetically pleasing in my community, and it had never hindered my very active lifestyle. Throughout school, I played softball, volleyball, and basketball regularly, I roller skated, biked, and was a dance enthusiast. But there were irregularities: I wore a bigger size in clothes on my lower body than I did up top; leg-swelling associated with my monthly cycle dictated what shoes or clothes I could wear; warmer weather made me swell like the Michelin man; and pregnancies with my two children were accompanied by such severe swelling that doctors worried that I had congestive heart failure. Wrong. But facile, incorrect conclusions were common from the medical community.
As common, in fact, as the daily diuretics prescribed for early-stage lymphedema patients who present with swelling. The problem is that while diuretics provide needed relief, the remedy is temporary and the medication contributes to worsening of the condition. Circulating proteins in the lymph fluid remain behind when the diuretics remove the water, leading to fibrosis and eventual skin breakdown in affected limbs. As the tissues thicken and harden, the vicious cycle of swelling is exacerbated, and the condition progresses through defined stages. In severe cases, amputation becomes a real possibility.
Several years back, in 2014, I opted for liposuction on my “cankles,” believing that removing what I thought was adipose tissue (fat) would make it mechanically easier for fluid to circulate in my lower legs. I don’t think the doctor was particularly careful (even asleep, I could hear him saying ugly things about my legs), and he didn’t prescribe post-surgery garments with a high enough compression value. My legs became asymmetrical, and I began to experience pain in the left leg, which was now bigger than the right one.
In 2016, I was hospitalized with sepsis from cellulitis and thrombosis in the lower left leg, the latter condition possibly a result of the endovenous ablation I’d recently undergone in my search for relief. This was when I was finally put on a path toward a formal diagnosis, via lymphoscintigraphy, and targeted treatment for my lymphedema. It had taken close to 40 years. In late 2017, I received a vascularized lymph node transfer to my left leg from the right axilla, where the vascularized graft was harvested for transplantation.
To maintain my leg health, I use a FlexiTouch pneumatic pump on my legs for one or two hours each day, do manual decongestive therapy, go for specialized lymphatic massage, wear specialized garments for my legs, and exercise often. I am also exploring suction-assisted protein lipectomy by a specialized cosmetic surgeon to further open some channels in my legs for lymph flow. My struggle will be for my insurance company to recognize that this is about my health and not vanity.
You see, cosmetic surgeons are the ones who have done a great deal in the field of microsurgery (transplantation and lymphovenous anastomosis) for lymphedema relief and lipectomy for comorbid lipedema, an adipose tissue disorder. And by the way, weight loss doesn’t alleviate either condition, and the misperception that it will is pervasive, even in the medical community.
According to the World Health Organization, lymphedema affects over 250 million people worldwide, and lipedema affects approximately 11% of women. We are struggling for recognition and the prioritization of research and education about treatments and social support for this disease, because doctors and other health care providers are woefully uninformed. There are countless stories of patients who have struggled for years with health professionals who didn’t have a clue about how to help them. The psycho-social cost of the pain, lack of understanding, disfigurement, and health consequences is high.
Today is World Lymphedema Day, and we want people to know about this disease. I was born like this, but lymphedema can strike anyone who has had cancer surgery, radiation therapy, or even a serious injury or infection. And once the swelling starts, your life changes forever. And it’s no laughing matter.