Rising up, Pleasure Odigie, now a 30-year-old journalist, didn’t perceive the time period albinism regardless of residing with the situation. Till one time in JSS 3 when her instructor taught her hereditary and albinism was mentioned. This information drew her to a special sample of existence as a result of that was when her life modified.
“Some classmates noticed it as a possibility to mock me. However earlier than then, I didn’t see myself as completely different as a result of I might carry out like everybody else. I solely observed that I couldn’t see from afar and I believed it was regular as a result of there have been dark-skinned individuals utilizing glasses too to right their imaginative and prescient”, Pleasure mentioned.
Albinism is a uncommon genetic situation brought on by mutations of sure genes that have an effect on the quantity of melanin your physique produces, making the individual unusually white. There are about two million people residing with albinism in Nigeria. 1 out of each 8 individuals carries the gene, and 1 out of each 15,000 people reside with albinism in Africa.
Individuals residing with albinism face lots of discomforting challenges because of the color of their pores and skin. Pleasure mentioned she was a youngster when she grew to become acutely aware of her situation. The myths surrounding albinism additionally contribute to the discrimination individuals with abinism face. “They are saying individuals residing with albinism have supernatural powers. I by no means had this and if I had, I’d have used it to eradicate ailments and poverty. Some additionally say we’re cursed or evil and can be utilized for good rituals. These are so unfaithful, however it’s common for individuals to say. I used to be stunned when a lecturer advised me I had supernatural powers,” Pleasure says.
Pleasure Odigie’s experiences replicate how society discriminates towards individuals residing with any type of specialty. However amidst this, Pleasure excelled in class and graduated from the college as the most effective feminine scholar in her college. She describes her faculty expertise as “difficult” and was capable of manoeuvre by resulting from confidence from family and friends who inspired her to see herself past her pores and skin color. She additionally gained sufficient encouragement from her paternal grandfather who was an educationist and a resourceful individual. This propelled her to not solely aspire for greatness, but in addition be a supply for encouragement to individuals residing with albinism.
The Nigerian authorities has a national policy on albinism which states the justification for the situation and the punishment for discriminating towards them. However regardless of an applicable coverage in place, victims nonetheless face dire experiences. Pleasure needs to alter that. “Albinism will not be a curse or illness that reduces life span. For me, it’s not a incapacity although individuals and organisations see it as that. I imagine incapacity has to do with the person or how you are feeling. I’ve hobbies, I’m into social work and I’ve an NGO for individuals with albinism to make sure they see past their limitations and enlighten them on skincare to scale back pores and skin most cancers.”
Pleasure can be a journalist and author, and has a e book membership for youths the place enjoyable and academic books are shared and so they get to play video games. Together with her registered NGO, she has helped hyperlink a number of individuals residing with albinism, pores and skin most cancers or eye issues to docs for surgical procedures, and on subsidised fee too. She is now engaged on an initiative to make sunscreen obtainable for individuals residing with albinism in Edo State and throughout the nation.
Pleasure will not be alone in garnering consciousness for albinism. There are a number of organisations like The Albinism Foundation, Initiative for Advancement of the Albinism Cause, White Angel Foundation and others offering help for individuals residing with albinism.
Pleasure says, “Among the individuals that died of pores and skin most cancers have been resulting from ignorance and never understanding methods to deal with their skins. What individuals residing with albinism want is the attention about their situation, to grasp methods to shield their pores and skin by avoiding the mid-day solar.” That is what Pleasure is doing along with her basis – serving to individuals residing with albinism stay their greatest lives; offering sources for individuals residing with albinism and customarily being an inspiration to individuals residing with albinism and society at massive.