I was diagnosed with sickle cell anemia while still in my mother’s womb. My older brother shares the same condition, yet it manifests differently in each of us. I remember one childhood occasion when he came to visit me in the hospital, where I was staying to undergo a blood transfusion, right after he’d been out enjoying a sunny day playing. It frustrated me deeply that I ended up hospitalized every couple of weeks, whereas he never faced such frequent admissions. This experience taught me early on that sickle cell disease impacts individuals in unique ways. For instance, as a dedicated sickle cell warrior, I deal with daily pain and require regular blood transfusions to manage my symptoms effectively.
Growing up in Michigan, my parents worked tirelessly to maintain a sense of normalcy in my life despite the numerous restrictions I faced. I was always inquisitive and yearned to participate in activities just like my peers. However, vigorous physical activity acts as a major trigger for sickle cell crises by stressing the abnormal blood cells, so I often had to sit on the sidelines while my friends swam in lakes or went tubing. There was one summer when I attended Girl Scout camp, dreaming of spending the entire season there riding horses. Unfortunately, my parents had to retrieve me after just two weeks due to my health needs. In my younger years, my mother played a crucial role in helping me comprehend my illness. She would explain it by saying, “You’re no different from your friends who catch a cold or the flu; it’s just that your condition is a bit more severe, requiring hospital visits.” This perspective shaped my understanding for a long time.
When high school came around, my parents encouraged me to apply to any colleges that caught my interest, refusing to let my health challenges derail my aspirations. Nevertheless, upon receiving acceptances from out-of-state institutions, my mother had a serious conversation with me about the realities of managing my condition independently. “I’ll manage somehow,” I assured them confidently. “But what if you can’t even walk?” she countered. Deep down, I knew she had a point. Sickle cell disease drains every ounce of energy from me, leaving some days where all I can do is rest motionless.
Ultimately, I chose to attend a local four-year university to stay close to my family and access the medical care I required. Although I lived on campus, my frequent illnesses meant regular hospital stays. This was in the era before cell phones were common, so my friends had no idea where I’d vanished to. I’d suddenly disappear in the middle of the night with my parents, and that was the end of it for them. For a while, I was furious, struggling to accept why my life had to revolve around sickness instead of typical young adult experiences like dating and looking stylish. Carrying my backpack alone left me utterly exhausted. Outwardly, I appeared like any other student, but inside, I was far from ordinary. Receiving blood transfusions throughout childhood necessitates various types with specific antibodies, and as a young adult, my needs for additional donations only intensified.
After graduating, as I transitioned into a career in logistics, I seldom disclosed my sickle cell anemia to colleagues. When absences were unavoidable, I’d cite alternative but plausible reasons, such as a pulmonary embolism or foot arthritis. On the rare occasions I did open up to employers about my diagnosis, I sensed they viewed me as diminished in capability, which stalled my career progression. There are times when I rely on transfusions or pain relief medications to function, but what I truly crave—and don’t always receive—in professional settings is compassion and understanding.
As I matured and contemplated romantic relationships, the idea of marriage felt impossible. Who would willingly commit to caring for someone in my situation? When I began a long-distance relationship with my future husband, it took me three full months to reveal my sickle cell condition. I described it as a blood disorder featuring crescent-shaped cells rather than the usual round ones, leading to oxygen blockages that damage organs. “People with sickle cell typically have a life expectancy in their 40s. Are you sure you still want to be with me?” I asked pointedly. He needed a couple of weeks to process it, then responded, “I want to be the one who takes care of you.” Four years afterward, I relocated to Dallas, and we tied the knot.
Marriage prompted discussions with my husband about starting a family—something I’d never dared to envision before, haunted by the thought of passing on my genes and leaving loved ones behind. Yet, tying the knot shifted my perspective, and we committed to trying for a year. Right as we were prepared to stop, I discovered I was pregnant. This little one inside me captured all my affection—and depleted every nutrient from my body. I endured sciatica, repeated pneumonia episodes, and a persistent pregnancy cough that prevented my lungs from fully expanding. Consequently, my hospital visits became even more frequent. Upon returning home postpartum, I realized high-stress office jobs were no longer feasible, so I pivoted to newborn photography, developing a thriving business from that foundation.
Simultaneously, I intensified my efforts in patient advocacy, a passion that had always come instinctively. My mother, who worked at the University of Michigan, began bringing me to disease-related lectures when I was around 6 years old, encouraging me to stand and share my personal experiences. This early exposure fueled my dedication to supporting others navigating their health challenges.
Through the years, I’ve come to appreciate that true advocacy extends far beyond my individual narrative. I’m no longer that vulnerable child confined to a hospital bed. Today, I’m a resolute advocate committed to reshaping the story—not only for myself but for countless individuals battling sickle cell or other chronic conditions who rely on blood from anonymous donors.
I understand that blood donation isn’t something most people prioritize, but I urge everyone to consider my journey and reflect on the profound impact a single donation can have. Particularly, I encourage people of color to step up, as they provide the ideal matches for sickle cell patients like me. Yet, such compatible blood isn’t always in sufficient supply, and enduring days-long waits for transfusions is excruciating—not just for me, but for my parents, husband, son, and all who hold me dear.
Certainly, there are common barriers like fears of contracting diseases, discomfort in medical settings, or needle phobia. However, it’s vital to recognize that the donation process is entirely safe. Needles might intimidate, but when you weigh it against the reality that your contribution could save a life—like it has mine repeatedly—isn’t that fear surmountable? I stand as undeniable evidence of blood donation’s lifesaving power.
