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.”