Jake Epelle,

Early years

Born 5th May 1961, I grew up in a fairly large and average polygamous family not knowing that I was born with albinism. My early infancy days were characterised with teasing and taunting by family members, childhood friends and school mates. While on the other hand, I found solace in my father and step Mum who took great care of me and showed me incredible love and affection.

I attended public schools and indeed had a hard time with seeing the blackboard: I had to go close to the blackboard amidst teasing and derogatory name calling and even sometimes insults and assaults by both the teachers and student alike.

Ignorant of the fact that I was born with albinism and the adverse effects of the sun to everyone with albinism, I played and worked under the sun without precaution. As a result, I was sun burnt and riddled with freckles and patches of early signs of skin cancer.

My adolescent years were a sort of mixed bag as I experienced both positive and negative sides of life. In the face of these seemly insurmountable challenges, I remained undaunted in my stride to succeed in all my endeavours.

Changing perceptions

A few months after The Albino Foundation began its operations on the 5th of May 2006, I sensed a strong urge to passionately embark upon an aggressive advocacy campaign with enormous zeal to correct the negative impacts of several years of discrimination and stigmatisation. I am determined to confront the lingering abuse and disregard for respect and dignity of life that I have witnessed as a person with albinism. And ensure that No individual with albinism will have to go through same experiences in my lifetime.

With God on my side, little education and less than an average income and no hands-on experience in social sector, I launched the foundation whose vision is “a society with equal opportunities for persons with albinism.” With the support and help from close family and friends who are sympathetic towards my plight, I stepped out to achieve the foundation’s mission.

I took a hard swipe at the untold challenges of people living with albinism - in Nigeria, Africa in particular and the world in general - and summed them up into five thematic areas:

• Negative social issues linked to discrimination, stigmatization and stereotypes.
• Lack of adequate healthcare for skin cancer and visual impairment.
• Lack of qualitative education and reasonable accommodation of the needs of people with albinism.
• Need for economic empowerment by providing entrepreneurial and skill-set development.
• Formulation of policies and parliamentary bill sponsorship to promote and protect the rights of people with albinism.

Looking back, after nine years of hard work, commitment and determination to see attitudinal change within society, focused policy drive and mainstreaming of albinism into various Government programmes and projects, I can beat my chest and say that this present and future generations of people with albinism will never be the same again.

What the future holds

I see a bright future for this and future generations of people with albinism thanks to the steps the UN systems are taking to support the albinism cause. While I pledge to continue the fight for better future of all people with albinism.