Nigerians living with albinism on
Thursday called on President Goodluck Jonathan to include their
representative in the planned National Conference.
The President of the Albino Foundation
of Nigeria, AFN, Jake Epelle, made the appeal on behalf of Nigeria’s
albinos in an interview with PREMIUM TIMES. He said the group has been
making efforts to draw Federal Government’s attention to the peculiar
condition of people living with albinism to no avail.
“We have six million albinos in the
country and so we need a voice. We should be heard. This is what we have
been saying to the government not only in Nigeria but in Africa and in
the world,” the official said.
“The integration of persons with
albinism is very important. We need to mainstream some our issues and
challenges into the national policy and discuss. We see this National
Conference as a platform to push our cases.
“Many people who go to such forums to
discuss issues that affect us don’t know ‘jack’ about albinism. I think
this is the right time and platform for us to be heard and we need to be
heard.
“We need, most importantly to be given
that sense of belonging in the country. We have no sense of belonging in
any country. Our people suffer the same fate all over the world,” he
added.
Mr. Epelle insisted that it is not
possible for people who do not understand the problems of albinism to
make policies and programmes that could favour those living with the
disorder.
Albinism is an inherited genetic condition that results in the absence of pigmentation in the eyes, the skin and the hair.
It is a global phenomenon that occurs in
people of all race and gender; but due to the unique make-up of people
living with the condition, they are susceptible to specific skin and eye
problems that could affect their economic and social status.
In view of the health challenges
associated with the condition, albinos require higher level of care and
attention that are seldom provided in conventional health care
facilities.
But Mr. Epelle said the input of people
living with albinism is critical in every process of national policy
formulation since such individuals would also be affected either
positively or negatively from such policies.
“We have about 10, 000 registered
members but that is a far cry of the six million albinos in Nigeria. The
official UN report says we are two million but we are much more than
that.
“The last United Nations research on
albinism in Nigeria was done in 2009 and that is the only report about
albinism in the world. The figure is one albino out of 18 persons but
the fact is that we are more than that number.
“We have been making frantic effort to get the government to include us as delegates to the National Conference.”
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