…..Albinism, hereditary not contagious-Epelle
Founder of the Albino Foundation, Mr Jake Epelle, has appealed to Nigerians and Africans to stop killing people living with albinism for ritual proposes.
Epelle made the appeal when he featured on the News Agency of Nigeria (NAN) Forum special interview programme on Sunday in Abuja.
He said “when the news broke that there were rituals coming out of all African countries, Tanzania and all that; not only is it true, I have seen it with my eyes.”
According to him, the country has witnessed its share of cases of persons living with albinism being killed for ritual proposes.
He said that in April 2014, he was almost a victim but was able to escape from the driver who tried to take him to an unknown destination.
“These are issues that surround albinism that have not been touched,” he said.
Epelle added that the foundation had also done a lot to ensure the protection of persons with disabilities in the country, including seeking hotlines from the police.
He said “I have gone to police to ask for hotlines where my members can call or encourage our members to report cases that we have to follow up.
“The Disability Rights Fund had once given us money with which we trained persons with albinism on how to protect their rights, how to promote their rights and how to prosecute those who violate their rights.”
He said that the Albino Foundation had inaugurated ‘the albinism champion’ and compiled handbooks in different languages to correct some of the myths and superstitions about albinism.
Epelle, therefore, appealed to the public to accord persons living with disability compassion and fair treatment to enable them to live their lives without fear of being violated.
Epelle said that the foundation was established in 2006 to address issues of albinism, which occurs in persons with limited production of melanin.
“It is hereditary and it is not contagious; because of the limited melanin, you have a pale colour in the eye, skin and hair.
“When you have that, you are referred to as Oculocutaneous albinism.
“The second aspect has to do with ocular albinism that is this individual has some measurable quantity of melanin, but it is not enough to correct defection in the eyes.
“So, you find the person with black hair and maybe a kind of skin tone that is referred to as ocular albinism.
“It is simply a skin condition. It doesn’t limit you from doing anything you ought to do.
“We have challenges with our eyes and not being able to stand the harsh effect of the sun but we are normal people.”
According to him, often times, people think that albinism is contagious and so, when a pregnant woman sees a person with albinism, she thinks she will give birth to a person with albinism.
“It passes from one generation to the other. For instance, my parents had me because they both have the gene.
“For you to be an individual with albinism, the gene has to be in both parents.”
Epelle said that the foundation had created awareness on issues of albinism which educated the public on the correct information.
He added that the formulation of better policies to address issues of albinism was hampered by a lack of accurate data on albinism in the country.
According to him, the foundation has carried out research in about eight states to identify areas with the highest number of persons with albinism, with some surprising results.
“That is a big problem because we don’t have accurate figures and that brings us to the issue of data; we need accurate data.
“As an organisation and the country in general, there is a need for us to be accurate.
“We have done some research in about eight states and a few surprises sprung up.
“The data show that the country has more persons with albinism in Kogi than in Enugu State, contrary to the belief that it is more prevalent in Enugu State.”
Epelle said that Nigeria had high number of persons with albinism compared to other countries.
“I’m fully convinced that there are more than four million persons or more with albinism in Nigeria, taking into consideration the number that we are projecting because it is a mere projection.”
He said that the foundation had agreed to work with the National Population Commission to capture albinism in the forthcoming census, which would enable the country to generate accurate date.
On funding of the foundation’s activities, Epelle said that the European Union provided a grant to which the Federal Government is a signatory to.
“So, in terms of government support, we get platform support and funding from a few international bodies and those fundings are geared toward projects,” he said.
According to him, some individuals and corporate organisations also assist the foundation with funds.
He commended the National Hospital, Abuja for its support in the treatment of cancer in persons living with albinism.
Epelle said that the foundation would continue to strive to address not just issues of albinism but issues that affect people living with disabilities in Nigeria.