Written by Celia Zhou, undergraduate student at Wake Forest University and participant in the Institute for Public Health Summer Research Program
A smile slowly started to brim across her face as I stepped onto the red concrete floor of her house. The house itself sat upon a hill, which overlooked a picturesque, idyllic landscape. It was serene and peaceful, yet the vivid imagery hid the social complexities behind one of the world’s most neglected tropical diseases.
As I entered the house, my eyes wandered until I finally focused on the woman standing in front of me. She appeared to be in her mid-30s, and she sported simple daily wear: a casual t-shirt and a mid-length skirt. There was kindness in her eyes, grace in her stance, and shyness in her smile. I continued to absorb the image in front of me, scanning from bottom to top. Everything from the soles of her feet to her knees appeared physically normal. I continued to glance upwards when I noticed a sudden distortion in physical appearance. The tissue above the woman’s knee was swollen at least thrice the size of what the volume of the limb should have been; the tissue ballooned out from all edges of her thigh. When I finally mustered the courage to make eye contact with her again, she was still smiling.
Following the visit to the woman’s house, I conversed with a local doctor, renowned for his work with lymphatic filariasis (LF), who shared with me that the woman had elected to undergo a cosmetic surgery some time ago to remove the enlarged subcutaneous tissue that was originally isolated to her calve. For at least a couple of months afterwards, her leg appeared normal despite the damaged lymphatic system that remained present in her body. Over time, the scarring from the surgery prevented the reoccurrence of edema in her lower leg as the tissue that remained was no longer as elastic as it once was. Fluid collected above her knee instead, where the fibrous tissue began to continuously swell. The woman now struggles to walk due to the disproportional size of her upper leg. I was baffled by what had occurred in her limb; however, I was more astounded by the fact that she was well aware that this was a likely outcome from the procedure. She was craving an immediate sense of normalcy, regardless of the repercussions. To have a physically normal leg—to be able to walk into town and not be stared at, was all she desired.
As an undergraduate biochemistry major intending to pursue a career in medicine, my curiosity with the field has always been focused on diagnostic and fundamental assessments of disease: mode of transmission, symptoms, course of treatment, and so on. However, as I embarked on the summer research project, of the Institute for Public Health 2018 Summer Research Program, that took me to Galle, Sri Lanka to examine LF-related lymphedema, I was reminded of the humanity of medicine. LF is a physically, emotionally, and socially debilitating disease. In cases in which severe lymphedema is present, the physical deformities, especially in the extremities of the body that are rather hard to hide by clothing, can propagate social isolation. In fact, studies have shown that nearly 20% of patients with LF show symptoms that meet the clinical criteria for depression¹. Quality of life is significantly impacted, yet the social implications of the disease are often forgotten.
LF is no longer recognized as a public health problem in Sri Lanka as of July 2016 due to the remarkable progress by the WHO Global Programme to End Lymphatic Filariasis. However, LF-related lymphedema is irreversible and will continue to affect millions across the world. The sacrifices individuals have made to create an illusion of a healthy life is appalling and heartbreaking, and the limitations imposed on patients diagnosed with LF by the rest of society is absolutely devastating. Nonetheless, interacting with incredibly generous patients who have endured many hardships is a humbling experience and a poignant reminder of what it means to be human. The time spent in Sri Lanka allowed me to realize that there is always room for improvement regarding sociocultural awareness of disease and that medicine is not just the pathophysiology behind sickness.
- Obindo, J., Abdulmalik, J., Nwefoh, E., Agbir, M., Nwoga, C., Armiya’u, A., … & Dakwak, S. (2017). Prevalence of depression and associated clinical and socio-demographic factors in people living with lymphatic filariasis in Plateau State, Nigeria. PLoS neglected tropical diseases, 11(6), e0005567.