International Albinism Awareness Day was celebrated worldwide last Sunday, with albinos in Nigeria asking for more government and community care and protection, which every Nigerian is entitled to.
To hundreds of albinos and advocacy experts who gathered at the Adeyemi Bero Hall in Alausa, Ikeja, Lagos, albinism is not a death sentence because albinos are normal human beings that can live normal lives and achieve everything in life – just like every other person. That was the thrust of the message during this year’s albinism day, which was celebrated with the theme, “strength beyond all odds.”
According to Onome Akinlolu Majaro Foundation (OAM) and the Lagos State Office for Disability Affairs (LASODA), which organised the celebration, children and adults with albinism in Nigeria still face multiple challenges, which restrict their lives. Co-founder, OAM, Mrs. Onome Majaro, said challenges that inhibit albinos’ routines include visual impairments, extreme vulnerability to skin infections and cancer, since they lack melanin in their skin. As a result, many die from skin cancer before they are 40.
Those living with this hereditary genetic condition that reduces melanin pigment in skin, hair and eyes, say stigma, violence, superstition and killing have greatly lessened. However, abuses have not been eliminated, as many Nigerians still dwell in superstitious mindset about people with albinism (PWAs), Mrs Majaro lamented.
“There are a whole lot of myths and misconceptions about albinism and PWAs such as: PWAs don’t eat salt; don’t get married; only see at night; that their blood and body parts can cure HIV and AIDS and also make you rich; this is why they are hunted like animals in East Africa.
“These are all untrue. PWAs live healthy lifestyles and make healthy choices too. Yes, due to the ultra-violet rays from the sun which cause skin cancer, PWAs are advised to stay off the sun or ensure they have proper clothing which covers the exposed parts. They are encouraged to use umbrellas, wear hats, sunglasses apply sunscreen to protect their skins. In obeying these directives, they continue to power, despite these visible limitations.”
Albinism, in any of its forms, is the result of heritable mutations that lead to defective melanocytes, unable to properly synthesise melanin and to distribute it through dermal tissues. Simply put, albinism is the inability of the skin cells to produce enough melanin in the eye, skin and the hair, thereby making persons with albinism vulnerable to the harmful effect of the ultra-violet rays (UVR) from the sun. Nigeria has one of the highest prevalence rates in Africa, with over 6 million PWAs. It is estimated that hundreds of PWAs face discrimination and stigmatisation annually.
Mrs Majaro, who said many parents of PWAs suffer the inability to afford basic things albinos need for survival, explained that albinism is a genetic condition that affects people throughout the world, regardless of race, ethnicity or gender.
“Very many, including children and women, are extremely vulnerable, isolated and subject to abuse and violence,”she added.
Over the years, OAM has been able to galvanise more PWAs to rise and shine and be proud of their complexion and see beyond the complexion. “Since 2015, the Foundation has spent millions in helping thousands of PWAs both directly and indirectly to become the best version of themselves. From empowerment, education, awareness, confidence building, provision of sunscreen and medicated sunglasses to organising several for on issues concerning PWAs, we have invested in improving a lot of many and our records show,” Majaro said.
However, since the pandemic started in 2020, OAM’s interventions have reduced since 100 per cent of its funding comes from the founders. “This has impeded the extent of our impact in the area of empowerment and scholarships, but we have remained resolute in social campaigns. We are open to external donors and grants from those who share our vision,” Majaro said.