Albinism is a rare genetic disorder where the person is not born with the usual amount of melanin pigment.
Melanin is a chemical in the body that determines the colour of the skin, hair and eyes.
Most people with albinism have very pale skin, hair and eyes. They are prone to sunburn and skin cancer.
An estimated one in 20,000 people worldwide are born with oculocutaneous albinism. The condition affects people in many ethnic groups and geographical regions. According to Medlineplus.gov
Albinism is most prevalent in sub-Saharan Africa with estimates of one in 5,000 to one in 15,000.
According to a Cleveland Clinic report, people with albinism may experience any of the following complications: skin problems due to their light-coloured skin.
The report further said that people with albinism may be legally blind, but they can learn to use their vision over time.
One major concern about albinism is its genetics.
Cleveland Clinic said albinism is passed down through families. People are born with albinism w
hen they inherit an albinism gene from their parents.
In oculocutaneous albinism, both parents must carry an albinism gene for their child to be born with albinism. The child has a 1 in 4 chance of being born with albinism.
If just one parent has an albinism gene, the child won’t have oculocutaneous albinism. But they will have a 50 per cent chance of being a carrier of the gene themselves.
In Nigeria, persons with albinism face numerous challenges such as discrimination, health issues which many of them complain about among others.
As a group and as individuals persons with albinism have protested against this discrimination.
The Association of Albinism in Kaduna State said that in some instances, the lives of albinos are threatened by some members of the society out of ignorance.
The News Agency of Nigeria (NAN) reports that an alarming rise in skin cancer has threatened lives of Albinos in Africa. In some instance there were fatalities.
‘Two albinos in Kajuru Local Government Area and one in Zaria d
ied. Their deaths were all linked to climate change-related issues, including skin cancer.
‘People with albinism lack melanin in their skin, making them more susceptible to sunburn and skin cancer.
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‘We are witnessing an increase in skin-related illnesses, adding to the challenges of our already difficult lives,’ Mr Abubakar Adam, the Chairman of the Association of Albinism in Kaduna.
The rising weather temperature resulting from climate change has also had impacts of the plight of albinos, with risk of skin cancer becoming higher.
‘We often seek refuge under trees or umbrellas to shield our skin from burning,’ he further said.
Adam explained that the association also focused on raising awareness about the high cost of living affecting most adults with albinism who struggle to work during the day due to the intense heat.
But part of the solution remains public enlightenment both for general public and couples whose children
and wards are albinos.
‘The organisation is actively sensitising parents about the importance of ensuring their children wear protective clothing.
‘This is to safeguard their skin from the sun. Moreover, we are intensifying efforts to raise awareness about cancer prevention among the albino community,’ he added.
The chairman highlighted the need for more proactive measures against the harsh effects of climate change.
Similarly, African Climate Reporters, NGO, says it is committed to scaling up enlightenment on the nexus between climate change and the plight of albinos.
Mr Ibrahima Yakubu, the Head of Communication and Strategies of the NGO said the campaign would be carried out in collaboration with the African Institutes of Waste and Environmental Studies and other scientific institutions.
He said the campaign, among others, would seek to mobilise science, climate and environmental journalists and other stakeholders to raise awareness among the general public.
While public sensitisation is important i
n the mitigating the plight of persons living the albinism, providing treatment, care and support is equally paramount.
The Vivigold Foundation for Albinism Empowerment, Education and Healthcare, an NGO, has advocated the establishment of special health facilities with dermatologists and other skin care experts to increase access to health facilities for albinos.
Miss Vivian Ezeonwumelu, Chief Executive Officer of the foundation, told the News Agency of Nigeria (NAN) in Awka, that albinos had higher risk of developing skin cancer compared to other members of the population.
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Ezeonwumelu said that five members of the Anambra State Albinism Association died of skin cancer in a space of four years.
She said such deaths could be avoided if albinos had access to healthcare service and experts in albinism-related conditions.
‘It is essential to shed light on the challenges faced by the albinism community in Nigeria and the
importance of addressing their plights and promoting inclusion.
‘Skin cancer is a significant challenge for individuals with albinism in Nigeria. Due to the lack of melanin, their skin is extremely vulnerable to the damaging effects of Ultraviolet (UV) radiation.
‘Most persons with albinism cannot afford the high cost of preventing skin cancer. Which is why we are calling on the governments, groups and well-meaning citizens to come to our rescue,’ she said.
Ezeonwumelu said there was the need to establish specialised health facilities across the country, to provide comprehensive support to address the specific health needs of the albinism community.
She said that healthcare professionals should also receive specialised training on albinism-related skin conditions to improve early detection, diagnosis, and treatment of skin cancer.
According to her, such specialised hospital will be a safe space to help combat stigma, provide emotional support, and facilitate access to healthcare services.
‘The health fa
cility will offer dermatological care and counselling to address the psycho-social impact of living with albinism, sun protection and skin cancer prevention, ‘she said.
Ezeonwumelu urged government agencies to collaborate with groups working with albinos to intensify awareness on skin cancer risks in the albinism community.
In the same vein, the Initiative for Advancement of the Albinism Cause (INAAC) has called on government to provide free sunscreen lotions for persons with albinism in the country.
Miss Joy Odigie, Executive Director, INAAC, told NAN that persons with albinism were dying from skin cancer, a disease that could be prevented through the application of sunscreen lotion.
She regretted that the high price of sunscreen lotions with high Sun Protection Factor (SPF) was preventing many persons with albinism in the country from using the lotions.
‘Individuals with Albinism lack melanin and therefore are susceptible to the harmful effects of solar ultraviolet radiation, including extreme sun sens
itivity, photophobia and skin cancer.
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‘The use of sunscreen lotions and creams, wearing appropriate clothing and spending limited time under the sun can reduce the incidence of skin cancers in persons with albinism.
‘Unfortunately, the price of sunscreen lotions and creams ranges from N10, 000 to N18, 000 150ml per tube and are not readily available.
‘Persons with albinism are advised to apply sunscreen lotions with high SPF at least three times a day and this will amount to an individual with albinism using more than one tube every month”, she said.
She called for continued public education about albinos and albinism as well as advocacy for the rights of albinos.
‘Although they may look different from the rest of us, people with albinism have the same rights and deserved to be shown love, treated with respect and dignity”, she said.
The executive director also urged the government to come up with policies and laws that protect t
he rights of people with albinism.
‘The government should also ensure that those who perpetrate violence against people with albinism are brought to justice,” she said.
In the same vein, Mr Jake Epele, Founder/CEO of TAFAfrica, formally known as Albino Foundation, urged President Bola Tinubu to reinstate free cancer treatment for persons with albinism at the National Hospital, Abuja.
The scheme was introduced by the administration of President Muhammadu Buhari.
‘As a skin cancer survivor, I know how expensive it is to treat persons with albinism who are suffering with skin cancer.
‘I think the time has come for the current administration to revisit this free treatment that has been applauded by the international communities as best practice.
‘So, let me use this opportunity to ask the President of the Federal Republic of Nigeria to instruct for this laudable programme to be revisited and reactivated.
‘So that there will be hope in the Renewed Hope Agenda for persons with albinism in Nigeria, God bless
the Federal Republic of Nigeria,” he said.
Source: News Agency of Nigeria