GULU– The low level of awareness on albinism in societies across Uganda may cause many more families having albino children to break down.
Christine Ateng 26, a mother of an albino child and resident of Aboke Township in Kole district was bewildered when her relationship ended abruptly after her husband realised that she had given birth to albino baby boy.
“I delivered this child in 2010, the father rejected him, left me and refused to support me even when I call him to tell him that baby is sick” Ateng painfully reflects. She says her husband believes it is a result of witchcraft.
Ateng says she is singlehandedly taking care of the boy, now 8 years old, including paying his school fees.
Ateng recalls that even after she explained to her spouse that her maternal family linage have albinism, and her son Okullu is the fourth albino, he could not listen claiming that it is a misfortune in his life.
Patrick Ogwang, a father of two albinos, a resident of Bukwoyo village, Lakwana Sub County Omoro district, is stranded with four children after his wife left him four years ago after she gave birth to their second albino child. Their third and fourth born are albinos. He says his wife accused him of having weak blood.
“I saw albino kids from my neighbor, and when my wife gave birth to one, I remained strong-hearted to look after him because it is normal but my wife was heartbroken. And when we were taken for ritual cleansing in Lira district after she delivered the second albino baby boy, she told me that she is too tired of my weak Acholi blood and she no longer wanted a relationship with me” Ogwang recalls.
Ogwang who is now married to another woman, says they are facing challenges of taking care of these children’s health because their skin is delicate and sunscreen lotion and eye glasses are expensive.
Some men believe albinism is a result of their wives involving themselves in extra marital affairs with white men.
Basil Ojera, from Owak Village, Anaka town council in Nwoya district, the father of an albino boy,said men abandon th children with albinism due to lack of knowledge and sensitisation.
Ojera and his wife have 12 children, but he says immediately his wife delivered the only albino boy in the family he developed mixed emotional feelings and thought of divorcing her but he got counseling from medical expert and he learnt that albinism is normal.
Ojera says the challenge in raising albino children, is the superstition that that albinos should not eat certain foods (for example food prepared with soda ash) and that they should never be given injections like it is done for the other children.
Barbara Anyinge, an albino and a local councilor representing Persons with Disabilities (PWDs) in Inomo sub county Kwania district says she has been facing stigma and segregation at work places due to her condition.
“The community thinks we are produced by ghosts and we are ghosts and the traditional leaders do not take action to protect children with albinism because we are mostly neglected by our parents” Anyinge says
She says many albino children could not go to school because of stigma from fellow pupils. Anyinge appeals to both cultural and political leaders to sensitise communities about albinism.
Ben Makeme, 18, an albino student at Restore Leadership Academy says albino students suffer in classes because of vision challenges, something he believes some teachers do not know about. He says back home in Mbale district, the community look at him with dismay, but his courage has overridden such stigma through hard work and investing in vegetables like onions, cabbages to raise money for school fees, if only to prove to the community that he is not any different from them.
“Even if [people in the] community call us names like ghost, dismay and kids with no hope; I consider those small challenges because I personally, have proved them wrong,” Makeme says.
Makeme expressed fear of moving freely among various communities since in some countries, albinos are targeted for rituals.
Makeme now in Senior Three wants to be a lawyer and serve the marginalized population.
What do the expert says?
Dr. Harry Mpewo, a Dermatologist at Hoima Hospital defines albinism as a genetic inheritance due to lack of melanin in body cells. He said it has 12 different types categorized in two namely; albino of the skin and of the eyes.
He says if two people with the albino genes have a child, there is a 25% chance that the child they get will be an albino. And 50% of chances may produce carriers. If only one of the parents has albino genes, there is no chance of getting albino children.
Melanin is the pigment that gives human skin, hair, and eyes their color. The absence of melanin in the skin causes the skin to be weak and susceptible to developing ulcers which the doctor says if not protected against, can develop into chronic skin cancer which commonly kills albino persons.
Dr. Mpewo noted that the absence of melanin in the eyes make them visually impaired because they can’t see light normally.
He says Uganda still grapples with medical services for albinos as the Ministry of Health has no special package for persons with albinism coupled with a few experts in the country, “We have few Dermatologists in Uganda, and it is a challenge to provide services to albino persons because the government doesn’t provide special services like sunscreen lotion in their health facilities.”
While speaking to persons with albino at a Health Camp organized by Lion Club International in conjunction with Lion Club of Gulu Metropolitan at Gulu Regional Referral Hospital on Saturday July 28th, Dr. Mpewo advised them to guard against direct sunlight by wearing clothes that cover their skin
fully and round brim hats. He also told them to apply sunscreen to avoid sunburns that may result into cancer.
Mr Aliro Omara an Independent Consultant on Human Rights hired by Office of Human Rights Commission in Kampala, is carrying out a research titled; “Situation of Persons with Albinism in Uganda” following the rights abuses of person with albinism in the country as noted by the United Nations.
He noted that in the recent past there has been lot of abuses of human rights of persons with albinism in Uganda and Africa at large, giving an example of Tanzania and Malawi where body parts of person with albinism became a commodity and medicine to some people through rituals.
Mr Omara says United Nations has taken interest to protect persons with albinism through its member states by tasking each country to take steps and protect the rights of persons with albinism.
The same resolution, the researcher says was adopted by African Union which is tasking each member state to take action of documenting and analyzing the situation of persons with albinism.
“I am collecting data to establish how many they are, the challenges they face in the community, health, education and survival within the communities they live in” Mr Omara says
“Greater emphasis is directed towards the rights of children with albinism and what the community thinks about the condition,” he said.
He says his findings will lead to recommendations that shall be used by the government and other stakeholders to improve the lives of persons with albinism.