Albinism, hereditary not contagious, says Epelle

Mr Jake Epelle, the Founder of Albino Foundation says albinism is not contagious, but hereditary, contrary to beliefs in many quarters.
He made the clarification while fielding questions on the News Agency of Nigeria (NAN) Forum flagship interview programme in Abuja.
He said that the foundation was established in 2006 to address issues of albinism, which occurs in persons with very limited production of melanin.
He added that “it is hereditary; 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 the 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 shows 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.”
He said that the country has a greater number of persons with albinism than many other countries.
He said “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 for its support in the treatment of cancer cases 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.