BY ABIEMWENSE MORU
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 when 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 died. 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.
“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.
The Head of Communication and Strategies of the NGO,
Mr Ibrahima Yakubu, 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 in 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.
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 facility will offer dermatological care and
counselling to address the psycho-social impact of living
EVELYN ZORZOR
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 sensitivity, photophobia
and skin cancer.
“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 the 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. (NAN Features)
