December 18, 2020
Dear Dr. Madara,
My name is Francile Elrod and in 2011, at the age of 39, I was a vibrant person; a spouse and mother of three incredible children, a full-time employee at a near-by University with a bright future before me, and a very physically fit and engaged individual who lusted for travel. As a trained ballet and modern dancer, I knew best how to interact with the world through movement. Not only was dance important to me, but I was also an avid runner and enjoyed nearly all outdoor recreation that often took me into the beautiful Blue Ridge Mountains that surround me.
Literally, in an instant, my world shifted and downward spiral in-sued that has robbed me of a decade of good living. After a typical day of working, exercise, and family I was sitting in bed to read before drifting off to sleep. I noticed my thigh was tingling and when I looked down I could see it was swollen. Had I injured it? I didn’t recall anything out of the ordinary. This moment marked what has become the most debilitating journey of my life, one that I NEVER imagined. For years I was like a hound on a scent, I tracked down every practitioner beginning with my wonderful local Internist who simply didn’t have much knowledge about lymphedema. I won’t detail every specialist I’ve consulted, but will say that my GP referred me to a lymphedema clinic at UVA with lovely therapists who told they ‘treat symptoms only’ and ‘my case was unusual’, to a plastic surgeon who performs lymphatic surgery at Johns Hopkins University who told me that my lymphoscintigram showed I had ‘no lymphatic flow’ and there was nothing he could do for me, to a UVA Vein Specialist who told me that my ultrasound showed vascular reflux from both knees down which they’d never seen before and ‘there was nothing they could do for me’, to a wonderful dermatologist who put me before a team of dermatologists for a case study leading to more testing only to admit that they couldn’t determine the cause of my debilitating lower body rash/fever syndrome. My dermatologist became a committed alley in helping me find someone who can help address the lymphedema and the cascade of co-morbidities. I now have an appointment with Dr. Rockson in May 2021 (1+ year wait list), but I still don’t know how I will get there because it’s either 80 hours of driving or 16 hours of flying, and Virginia will not allow for virtual consultation even during the Coronavirus pandemic.
I chart the progression of this disease daily. I have spent thousands of dollars on durable medical equipment (not covered by insurance company, Aetna) and doctor visits across the east coast. I have spent hundreds of dollars on therapy and countless hours in meditation to cure myself. I have fought hard to keep moving and not let this illness define me, but it is ever-present in my life. My legs are disfigured and burn nearly all the time. I cannot stand still for more than a couple minutes before I begin to fidget like I am a toddler who needs to pee or a barefooted woman standing on hot potatoes. I cannot sit with my feet on the floor; they are nearly always elevated. I developed debilitating skin infections that last for 6 days accompanied with fevers at 103 that are intensely painful and leave me wanting for death. I cannot drive for more than 20 minutes without finding ways to elevate my feet and pump my legs. I am terrified of flying because I know it can worsen my lymphedema. My kids know me as a person who requires a lot of accommodations, my work knows me as a person who struggles deeply with a condition that no one seems to know anything about, but that I’m constantly pre-occupied with managing, my friends pity me and try to love me through it (although I know they must tire of me), my husband loves me despite the fact that I no longer look as I once did and I cry a lot. I don’t dress like I used to. I wear expensive compression tights every waking moment. I have few evening commitments because I must be off my legs, and am frequently hooked up to a compression machine for 2 hours.
My sense of self has been torn down. I now struggle with bouts of depression (who wouldn’t?) because I see my body deteriorating and I don’t want to face the future before me if we don’t find a cure. In fact, I refuse to imagine a future without a cure. We are close.
I know our health system can do better than this. I know doctors want to do better than this. I need the influencers in the medical profession to care about this issue. I need research to be funded. I need action now.
I am under the impression that recently an article written by Dr. Stanley Rockson was rejected by JAMA that voices a critique on this countries slowness in better understanding and responding to lymphedema. I implore JAMA to reconsider its decision not to publish Dr. Rockson’s article. I, and many others in my position, need pressure and attention applied to insurance companies to cover durable medical equipment, to pharmaceutical companies so they see the benefit in sponsoring treatment studies, and to medical schools so that physicians receive more comprehensive education about lymphedema, which I believe they will appreciate. For me, this comes down to my life, and there are many others like me. Please use your position and power to elevate the conversation making lymphedema, lipedema, and other lymphatic diseases a priority for the medical profession.
Francile Elrod, Buena Vista, Virginia