Every year, on June 19, World Sickle Cell Day prompts governments, institutions, and individuals to reflect on the realities of living with sickle cell disorder (SCD). While policy conversations and medical advancements often dominate the headlines, the lived experiences of individuals managing the condition—what it costs, what it teaches, and what it demands—offer equally critical insights.
In Nigeria, where policy gaps persist despite growing awareness, stories like Victory Nnamdi’s reveal the layered human experience behind the statistics and what it means to live as a true “warrior.”
A genetic disorder, sickle-cell disease distorts the shape of red-blood cells, limiting their ability to carry oxygen through blood vessels. The crescent-shaped cells typically trigger severe pain episodes, organ damage, and infections. With 150,000 newborns diagnosed in Nigeria annually, Nigeria bears the highest burden worldwide.
Nearly half the children born with SCD in Nigeria do not live past age five. Those who survive grapple with frequent hospital visits, career or academic disruptions, and social stigma.
These were the circumstances into which Victory Nnamdi was born. Through resilience, however, she transformed a lifelong diagnosis into a strong sense of purpose. As a personal brand and social-media strategist, Nnamdi highlights the personal triumphs from facing a chronic ailment head-on.
Early Diagnosis, Early Lessons
Nnamdi was a mere three-month-old infant when a doctor diagnosed her with sickle cell disorder after a series of mismanaged treatments. Her parents met the diagnosis with a fierce support system that ensured her survival. “My parents were very intentional,” she says. “They made sure that there was no other side illness besides what I have to cope with.”
Yet she wasn’t immune to the psychological toll. A passing joke about her skinny legs caused her to stop wearing skirts completely. “I switched to trousers and long gowns just to hide.”
“There were times when I just hated myself, hated my body, even hated my parents,” she admits. “I thought no one was paying attention to me, so I stopped caring about how I looked.”
Up to 35% of people living with sickle cell experience symptoms of depression, according to a 2022 review.
Despite the deep sense of insecurity, she credits those early lessons and her parents’ guidance for her discipline and self-awareness.
The Academic Struggle
As with others with the disease, Nnamdi’s academic life was erratic. In secondary school, she was “almost never in school,” she says. At the Federal University of Agriculture, Abeokuta, where she studied Home Science and Management, the demands intensified. “There were times I missed exams, tests, even entire classes. I had to do carryovers.”
She also remembers moments of deep frustration, like when her HOD told her that she couldn’t do anything about her absence. “That statement at that time made me wish I was probably a normal human,” she said, shocked at the lack of empathy.
Shortly after graduation, Nnamdi battled the most severe health crisis of her life. For five months, she suffered complications, including hepatitis, that took a heavy toll on the family’s finances, derailed her NYSC plans, and left her physically broken.
It was during this period that she began exploring LinkedIn, just to stay connected. It would become one of her most transformative platforms.
Reframing the Narrative
Nnamdi credits a student fellowship group she joined during her pre-degree year for being a springboard for her transformation.
Over time her posts on LinkedIn evolved from personal reflections into a strategy for impact. “People could relate to my vulnerability,” she says. “They saw that if I could show up consistently, maybe they could too.”
Although she didn’t plan to become a social media strategist, a casual remark from her ex-boyfriend nudged her in that direction. She began an internship that would mark the beginning of a thriving career. Today, her online community boasts over 14,000 followers.
“Weekends are for me,” she notes, a strategy that helped her balance health, content creation, and former 9-to-5 roles. Recently, she resigned from her full-time position to focus on her personal projects. One of these is her personal newsletter “Dear Warriors,” which she launched this June.
“Dear Warriors” is a deeply personal project that documents the day-to-day experiences of living with sickle cell.
Living with sickle cell in Nigeria entails hefty financial costs. Medications alone cost around ₦50,000 monthly, and hospital admissions for emergency crises often run into hundreds of thousands. Still government support is limited.
“I have seen some NGOs that are very supportive, but I don’t know about the government.” She recalls being asked to pay for full blood work at a government clinic, despite being in visible crisis.
Beyond medical costs, there are impacts on her social life, her work, and her self-image. Imposter syndrome still lingers. “I still fidget a bit before I take up anything new.”
Love and changing mindsets
Nnamdi’s views on relationships are grounded in science and empathy. “Don’t take love selfishly,” she says. “A failed relationship is better than bringing a child into the world to suffer, [which] is not fair.”
She criticises the religious and cultural fatalism surrounding SCD in Nigeria. “People say things like ‘there is nothing God cannot do’ when SS to SS is medically incompatible. That mindset has to change.”
Looking Ahead
In five years, Nnamdi hopes to be professionally stable, personally fulfilled, and pursuing a master’s degree.
Her mother, she says, is her greatest motivation. “She’s not a warrior, but she has been so amazing and supportive. She gives me the strength to keep showing up.”
Her younger sister also lives with sickle cell, and she is determined to make the path smoother for her–from financial support to emotional mentorship.
As the World Sickle Cell Day passes, Victory’s story is a needed reminder: true awareness is not just about knowing what sickle cell is; it is about understanding who it affects, how it shapes lives, and what society can do better.
“Nobody is coming to save you,” she says. “If you don’t pick yourself up, no one else will. Love yourself, love your body and just be positive always.”
World Sickle Cell Day on June 19th sheds light on the challenges of living with sickle cell disorder (SCD), particularly in countries like Nigeria, where policy gaps persist. Sickle cell disorder is a genetic condition causing red blood cells to become crescent-shaped, leading to severe pain, organ damage, and infections. Nigeria has the highest global burden, with 150,000 newborns diagnosed annually, and nearly half of these children do not survive past the age of five. Victory Nnamdi's story exemplifies the resilience required to live with SCD, as she battled frequent hospital visits, academic disruptions, and social stigma to become a personal brand strategist.
Diagnosed at three months old, Nnamdi's parents provided crucial support to navigate the medical and psychological burdens of the condition. Despite facing depression, insecurity, and academic challenges, she learned invaluable lessons of discipline and self-preservation that shaped her life. Nnamdi's college years were marked by absenteeism due to health crises, but she found solace and transformation through an online platform. Her proactive use of LinkedIn for self-expression evolved into a thriving career as a social media strategist, where she shares her lived experiences with an audience of over 14,000.
The financial and social costs of SCD in Nigeria are substantial, with monthly medication costs and frequent hospital admissions posing significant financial burdens, compounded by limited government support. Nnamdi continues to advocate for awareness and change, challenging cultural and religious misconceptions about SCD. As she works towards her future goals, including a master’s degree, Nnamdi remains motivated by her mother and her younger sister, who also has SCD. Her story is a powerful reminder that true awareness of sickle cell disorder encompasses understanding its impact on individuals' lives and fostering societal change.
