The human stories behind albinism in Nigeria
By Juliana Taiwo-Obalonye
Albinism, a genetic condition characterized by a lack of melanin pigment in the skin, hair, and eyes, affects millions worldwide yet remains widely misunderstood. Beyond its visible traits—very pale skin, light hair, and vision difficulties—albinism carries a complex human story shaped by cultural myths, social challenges and resilience.
For many living with albinism, the condition is more than a medical diagnosis; it is a daily journey marked by discrimination, isolation, and at times, danger. In some communities, deep-seated misconceptions fuel stigma and even violence, while individuals struggle for acceptance, education, and basic rights. Yet amid these hardships, countless people with albinism are rising as advocates, educators, and beacons of hope, challenging prejudice and reshaping narratives.
International Albinism Awareness Day (IAAD) is observed annually on June 13. The United Nations General Assembly officially established this date in 2014 to raise awareness about the human rights challenges faced by people with albinism worldwide and to promote their inclusion and protection.
On International Albinism Awareness Day 2025, the stories of Nigerians living with albinism came alive—not just as tales of struggle, but as powerful narratives of resilience, hope, and the quest for dignity in a society that often misunderstands them.
Nigerian actor, Damilola Ogunsi, known on stage as The Gold Fish, has turned his albinism into a beacon of hope. Reflecting on his journey, in a his facebook post, he said: “Today is International Albinism Awareness Day 2025. Sing along! Oyinbo pepper. Afin. Sweet names! They say I make albinism look cool, and I’m sure I do. But I don’t do it for you. Oh no, I do it for me and for people like me who need someone to look up to in a society that ridicules what it doesn’t understand.”
He speaks candidly about his mission: “I’ve always wanted to live a life of impact—1. To play the cards life dealt me well. 2. To be a positive influence in society. 3. To defend the validity of my dreams, regardless of the colour of my skin. By God’s grace, I’ve fought that fight and to a very large extent, I’ve transcended.”
Ogunsi does not shy away from the harsh realities of albinism in Nigeria: “It’s tough enough living in the tropics without melanin, exposed daily to harmful UVA and UVB rays. We’ve lost many PWAs (People With Albinism) to cancer and other health conditions. Many live with visual impairments, from shortsightedness to near blindness. And far too many are battling low self-esteem in a society that still believes we’re objects for rituals. It’s a spectrum of pain most will never see.”
Yet, his message is one of celebration and empowerment: “So today, join me in celebrating everyone you know living with albinism. We were born this way, and we can’t change it. As we mark this year’s IAAD (International Albinism Awareness Day) I urge society to remember: Kindness is the path to inclusion. Love is what makes the world better and Every human, regardless of difference, deserves good. Lastly, I want to thank me. Thank you, Damilola, for holding on. For staying strong. For moving forward. For fighting and shattering stereotypes. For becoming more. For working on yourself. For showing up. For silencing the voices of doom. You are worthy! Now go on—show them how it’s done. The Goldfish!”
From Awada Layout, Obosi, Anambra State, Achi Dominic Oluchukwu shares the painful realities of growing up with albinism: “Growing up as a child with albinism was not easy at all, starting with the issue of not seeing the board even at the front roll, to look down by teachers who even say it to your face that the albinism would render life useless. ‘Would you let your child marry a person with albinism?’ they asked amongst themselves (the teachers); thereby letting me feel and think I am less a being.”
He described the social isolation caused by his low vision: “Issue of not bonding friendships due to low vision which makes things fall with your pals, that they would want to go out and intentionally leave you behind. Your close friend or classmate may pass you by at a very close range without you recognising him/her due to poor vision which normally makes people think you’re less a being that cannot fend or defend himself.”
Oluchukwu also highlighted discrimination within family and employment: “Lots of look down due to poor vision, from family (parents favouring the other children against the one with albinism because they believe that he has low prospect), employers prefer people with sharp vision which challenges persons with albinism.”
He speaks about the harsh environmental challenges: “Sun being our rivalry, bright sky aids in exasperating situations. Staying away from sun (10am-4pm), which is the working period due to skin sensitivity and being able to fend for yourself in the current Nigerian situation is really suicidal.”
Mrs. Nwadiegwu Anthonia, mother of three children with albinism, shared her journey of confusion, advocacy, and hope:
“When I had my first child 15 years ago, I was totally confused as many people gave me series of advice on how to care for him. One thing I do remember is the advice of my doctor on my postnatal visit: ‘Whatever you start with this baby do not change it.,” he said
She recounts the academic marginalization her son faced: “Academically, he is brilliant. He was marginalized in nursery school. They would leave him to be moving round the school compound unaided. When I noticed it, I changed him to a better school where his intelligence was harnessed.”
Bullying continued in secondary school:
“In secondary school, I registered him into a seminary in Nnewi but bullying, stigmatization, mockery and others could not allow him to concentrate. I reported the case to ASAA (Anambra State Albinism Association) through my hardworking chairperson, Lady Vivian Ezeonwumelu. She sent her exco members to meet with the seminary authority yet nothing positive happened. So, I withdrew him and registered him in a day school where he feels comfortable studying now.”
Her daughter also faced challenges: “The girl also faced bullying when she was in junior classes. Now she is in senior class and she takes care of herself. The last one is one year old now.”
She pleads for societal change: “The society is not accommodating children with albinism and I pray that with Vivigold Foundation, their rights will be given to them. I want to officially appreciate the founder of Vivigold Foundation in the person of Ezeonwumelu Vivian. If you have not come in contact with her, please do because you are really missing a lot. May Almighty God continue to keep her for us. I humbly pray.”
Israel Victor Orizu opened up about the emotional and social challenges of albinism. He said: “Living with albinism can be quite challenging because the skin of the individual lacks the dark pigmentation called melanin and that makes him or her to be at risk of developing skin cancers. For me as an individual, people don’t see me as a normal person because I avoid the sun. When I use the umbrella, they often laugh and make mockery of my situation.”
He listed some of the hurtful names he has endured: “Some call me names like: Abi Abi, up NEPA, Afi, Ebo, onye ocha onye ocha mmiri oku suu, garri mee etc. At times, it tends to demoralize me.”
But Orizu found strength in education and community leadership: “During my senior secondary school days, I encouraged myself and faced my studies and decided to bring the best out of me. At the end of the third term in SS2, I was declared the best mathematics student in the class of 167 and the students shouted, ‘the Albino!’ From there, they knew we can make it and from there I began to push through.”
He is now active in community politics:
“After my university education, I joined my community politics and became the secretary of our community youths forum from 2016 till date and also the secretary of my kinsmen from 2017 till date. Even in my place of work, I try to be known by what I can do differently from others.”
He concluded with a message of perseverance: “So in as much as the sun is a challenge to people living with albinism, we have to keep pushing to be part of our society.”
Vivian Ezeonwumelu’s story is one of transformation from suffering to leadership. “My journey with the Vivigold Foundation for Albinism Empowerment, Education and Healthcare began from a place of deep pain—but also purpose. As someone born with albinism in Nigeria, I didn’t just face the usual challenges of growing up in a developing country—I carried the added burden of stigma, discrimination, and serious health issues.”
She described the emotional toll: “The emotional and psychological impact was real. I remember looking in the mirror and wondering if society would ever accept me for who I truly am. But even in those dark moments, one thing kept me going: the desire to make life better for others like me.”
Her activism started with community organizing: “When I finished school, I had no job and no income. I was fully dependent on my parents, and though I had big dreams, I could only do very little. But the passion in me refused to die. I began by gathering people with albinism in my community. We started registering with the Joint National Association of Persons with Disabilities (JONAPWD), believing that our voices mattered.”
The loss of four members to skin cancer galvanized her: “The heartbreak was worse when I lost four of our members to skin cancer within two years. That pain pushed me to say, ‘Enough is enough.’ I knew I had to do more.”
Her efforts expanded through education and advocacy: “With time, I started going from place to place, educating people about albinism—what it truly is and what it is not. I shared my story and listened to others. I saw that people with albinism didn’t only suffer health-wise; they also battled poverty, rejection, and social exclusion. That realisation opened my eyes even more. It gave me the push I needed to build a supportive community—a safe space where people with albinism can feel seen, heard, and empowered.”
The Mandela Washington Fellowship was a turning point: “That was when I decided to apply for the Mandela Washington Fellowship for Young African Leaders—a programme I had always admired from afar. By God’s grace, I was selected. That experience was life-changing. I met like-minded people from different parts of Africa, and as I shared my dreams with them, they encouraged me, gave me fresh ideas, and helped me see that what I was doing had value. The fellowship reminded me that the government alone cannot do everything. We all have a role to play.”
She explains the origin of the foundation’s name: “Interestingly, the name ‘ViviGold’ was a nickname someone once gave me. I held onto it for years, not knowing it would one day become the name of my life’s mission. Today, I’m giving that name back to society—not as a person, but as a purpose.”
Her foundation’s mission is clear: “Through Vivigold Foundation, we are committed to raising awareness, educating people, and advocating for the rights of persons with albinism. We provide health education, emotional support, and a platform for inclusion and empowerment. Our mission is simple but powerful: to help people with albinism live full, confident, and productive lives.”
Vivian’s vision for the future is hopeful: “We want to see a Nigeria—and an Africa—where people with albinism are no longer pitied or pushed aside, but are embraced, empowered, and given equal opportunities to shine. Leading this foundation is a calling for me. Every day, I’m inspired by the courage, resilience, and beautiful stories of those we serve. Together, with a passionate team and the support of kind-hearted people, we are breaking barriers, changing mindsets, and lighting the way for a better future. This is just the beginning. And I believe the best is yet to come.”
In Abuja, First Lady Oluremi Tinubu lent her voice to the cause, emphasising the theme of this year’s awareness day: “Demanding our rights: Protect our skin, preserve our lives.”
She expressed solidarity with persons with albinism: “People with albinism deserve not only equal rights but also the dignity, safety, and healthcare needed to live full, healthy lives,” she said. “We must build a society where every Nigerian, regardless of skin condition, can thrive with pride and dignity.”
She reaffirmed her commitment to championing inclusive policies and public education, urging Nigerians to foster a community that respects and uplifts all its members.
“I reaffirm my commitment to advocating for inclusive policies and public education that protect the rights of persons with albinism. We must build a society where every Nigerian, regardless of skin condition, can thrive with pride and dignity.”
The stories of Damilola Ogunsi, Achi Dominic Oluchukwu, Mrs. Nwadiegwu Anthonia, Israel Victor Orizu, and Vivian Ezeonwumelu reveal the multifaceted challenges and triumphs of living with albinism in Nigeria. Their voices echo a powerful message for society: Kindness is the path to inclusion; Love is what makes the world better and every human, regardless of difference, deserves good.
Their stories urge us all to embrace kindness, foster inclusion, and celebrate the dignity of every human being, regardless of difference.
The call to action remains: “Let us stand together to build a society where people with albinism not only survive but thrive with pride and respect.”