By Bilkis Abdulraheem Lawal
Every September, the world marks Sickle Cell Awareness Month to shine light on one of the most common genetic blood disorders affecting millions across Africa and beyond. Behind the statistics are real people whose lives are defined by both unimaginable pain and extraordinary resilience.
Anya Nyako, a sickle cell warrior, describes her journey as both a curse and a blessing. Against all odds, she’s a practicing Nigeria Nurse today.
“The kind of pain we go through is excruciating. I would not wish it on anybody. Some women who have given birth and also live with sickle cell say the crisis is even more painful than labour. That is how intense it can be,” she said.
A Childhood Diagnosis That Changed Everything
Her journey began at the age of five when a nosebleed refused to stop, leaving her vomiting lumps of blood. After several failed treatments at a private hospital, her parents rushed her to Jos University Teaching Hospital where tests revealed she had sickle cell anemia.
“It was a shock because we had no idea,” she recalled. “Growing up, I fell sick often, sometimes from just a mosquito bite, but sickle cell wasn’t something people knew much about then.”
From that day, hospital visits and admissions became part of her life.
School, Work, and Relationships
Sickle cell shaped her childhood and adulthood in profound ways. As a student, frequent crises kept her away from school for days or weeks at a time. “Sometimes, I was admitted two or three times in a single month,” she said. Yet, she pushed through and graduated alongside her peers through sheer determination.
In the workplace, she has had to explain her condition to colleagues and employers, preparing them for moments when stress, dehydration, or cold weather might trigger a breakdown.
From right: Anya Nyako and her colleague attending to a patient
Relationships, too, come with unique challenges. “Sometimes when people find out about your genotype, they back out. They don’t want the struggle. It can be heartbreaking,” she admitted.
Misconceptions and Stigma
For years, myths have clouded public understanding of sickle cell. Some believed affected children were “spirit children” who died and returned. Others still claim that crises end after the age of 20.
“These are falsehoods,” she said firmly. “Sickle cell is lifelong. The crises don’t stop; you just learn to manage yourself better as you grow older.”
She stressed that with proper care, many warriors live long, fulfilling lives. “People assume we cannot marry or have children. That’s not true. With good medical support, we can live normal lives.”
Coping with Pain and Support
When crises strike, her life comes to a halt. “I become completely incapacitated. My family has to bathe me, feed me, and massage the parts of my body that hurt. Without them, I don’t know how I would cope.”
Her coping strategy includes pain medication, hydration, rest, and emotional distractions such as music, movies, or conversations with loved ones.
Her strongest anchors are faith and family. “I believe God made me this way for a reason, perhaps to encourage others. No one is on earth by mistake,” she said.
Healthcare providers, she added, have also been lifesavers. “They know what to do when I arrive in crisis. Sometimes the system frustrates us, but mostly, they save lives.”
Universal Health Coverage
Anya called for subsidy or provision of free medication for people living with Sickle Cell Disorder. The high cost of medications for sickle cell disorder imposes a heavy financial burden on patients and their families, often resulting in treatment gaps and preventable complications.
“If you cannot afford advanced treatments like gene therapy, you rely on daily medications, and these are expensive”.
Integrating sickle cell care into Nigeria’s Universal Health Coverage (UHC) framework is essential to ensure equitable access to affordable treatment.
Government-led subsidies or full coverage of essential drugs under the National Health Insurance Authority (NHIA) would reduce catastrophic out-of-pocket spending, improve adherence to treatment, and advance national targets for UHC.
Prioritising sickle cell within health financing reforms would strengthen social protection mechanisms and safeguard vulnerable populations from health-induced poverty.
• Make newborn genotype testing mandatory to reduce new cases.
• Introduce compulsory genotype counseling for intending couples.
A Message to Fellow Warriors
Her story is not just about struggle, it is about resilience.
“Do not let your experiences define you,” she said in encouragement to other warriors. “You are strong, beautiful, intelligent, and capable of achieving anything. Many successful people, athletes, artists, politicians, live with sickle cell. If they can do it, you can too.”
Her own life reflects that belief. Inspired by the doctors and nurses who cared for her during countless hospital stays, she chose a career in healthcare. Today, as a nurse, she channels her pain into compassion for others.
“I wanted to help people feel better, to put smiles on their faces. That’s why I chose nursing.”
Her story is a reminder that while sickle cell remains a heavy burden, it is not the end of the road. With resilience, support, and the right policies, warriors can live long, fulfilling lives.
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