TELL Magazine

Youths living with albinism in Nigeria face an uphill task fighting discrimination and stigmatisation while grappling with health challenges

By now, Ruth Modejemu is used to the reality that she carries the albino gene, which leads to changes in melanin production in the body. Albinism is a congenital disorder characterised by either a complete or partial absence of pigment in the skin and hair due to the absence of tyrosinase, a copper-containing enzyme involved in the production of melanin.

But at the age of six, Modejemu was very bitter about being an albino. She repeated primary one class four times because her teacher stigmatised and dumped her at the back of the class. Now, this had serious consequences for her education since albinos have eye defects that ensure that they cannot see from a far distance. Consequently, she concentrated more on drawing on her notebook while her teacher taught the class. But her story changed when a more understanding teacher came into the same class and drew her closer to the front row, giving her special attention. That was when it was discovered that she was not a dull pupil after all.

Her stigmatisation went beyond the classroom to her relationship with friends. During her university days at the Delta State University, Abraka, Modejemu was stigmatised by her friends. She soon discovered that most of her classmates found it easier to relate with her when they needed help in the examination hall than outside it. At a stage she decided to go without friends within or outside the examination hall.

She also faced rejection in a church she attended. For instance, Modejemu sings in the church choir but when it was time for international competitions and travel opportunities, she was always dropped.

Now 27, a graduate and active job seeker, Modejemu is once again facing challenges relating to her skin colour. She said she has missed quite a number of job opportunities simply because she is an albino. Being a graduate of Fine and Applied Arts, Modejemu says she has resolved not to fold her arms while seeking employment. She is currently making a living through her artworks while hoping that someday she will be able to secure a formal employment.

The stigmatisation she has had to go through however does not extend to her relationship with the opposite sex. Unlike other albinos, she has no problem getting into a relationship. “I have albino ladies who complain that men have refused to marry them because of their colour, but in my case it is different.  In fact, I have many of them, I’m only being careful to make a right decision,” she said. The beautiful lady who has a spotless skin could easily be mistaken for a white woman, except that a closer look into her eyes would show she is an albino.

In fact, the only major challenge Modejemu has is her vision, and this is common among individuals with albinism. Visual defect is most common with albinos, with some of them being cross-eyed (strabismus), others suffering sensitivity to light (photophobia) and rapid eye movements (nystagmus). In addition to the eye problem, albinos are also easily prone to skin cancer because of the lack of melanin in their body. They are usually advised to wear full covered clothes, sunshades and hat to help prevent the effect of the sun on their skin. If it took a dark skinned man one hour to be affected by the sun, a white skinned man 35 minutes, the albino needs only five minutes’ exposure to the sun and his skin would turn red as if he got burnt.

Fourteen-year-old Augustina Nwankwo also faces serious stigmatisation from her mates. The lass who is lucky to be one of the 45 children offered scholarship for secondary education by The Albino Foundation, TAF, suffered more stigmatisation in her school’s boarding house. In fact, her hostel mates went as far as calling her a “witch.” She recalls how things usually get worse at nights with her hostel mates refusing to go close to her, saying that her eyes were usually like that of a witch. One day she ran home in tears blaming her father for her situation. “Why did you bring me into this world to suffer?” she asked her father in desperation.

Felix Nwankwo regrets that once children see someone different from them, they tend to use hurtful words on such persons. This, he said, was what happened to his daughter, Augustina. Now, Nwankwo said his daughter is in a world of her own and feels very lonely without friends. Also suffering a similar fate is 14-year-old Clinton Abdullahi, an albino in Senior Secondary School 1 with a great love for football. But he has a challenge. Most times his mates play football under the sun and he cannot because of his skin and this makes him feel bad. Protecting Abdullahi’s skin is a major challenge for his mother. She is very careful at selecting long sleeves to protect him from the sun. He also uses sun cream. While the young ones lament, some older albinos who are better informed have got over their emotions and are now comfortable with their skin colour.

In fact, some of them are grateful to God for being an albino. Afam Kasim said he does not see himself as inferior to others. “Two people who are dark in complexion might get married without knowing that one of them has an albino lineage; along the line they could still give birth to an albino,” Kasim said. At 40, Kasim a happily married man with five children has no regrets. He married a woman who is dark in complexion and all their five children have normal black skin. “In fact, in my next world I’ll like to come back as an albino,” he told the magazine.

Jake Epelle, chief executive officer, TAF, was motivated to initiate the albino foundation so as to support albinos. Being someone who lives with the albino gene, he knows exactly what it feels like. “Growing up was tough, that’s why we are here today trying to make it impossible for the present and future persons with albinism to go through what we have gone through. What I passed through is what motivated me but ultimately God did.”

Since 2006, Epelle and his colleagues at TAF have been on a mission to assist albinos in Nigeria. They have succeeded in getting the foundation all around the federation with the assistance of some development partners and government agencies that support their concept. He said that the foundation has been able to support youths with the condition free.

For two years the TAF has been running scholarship programme for 45 children. Over 400 individuals with albinism have been treated for skin cancer in the free cancer treatment programme. An albino was sponsored to study for a master’s degree in Scotland, United Kingdom, UK. Several individuals with albinism are undergoing training in vocational skills.

Epelle is particularly happy with the support TAF is currently enjoying from the federal government. “This is the only country where albinos are treated free for skin cancer that I know,” he said. For instance, the Nigerian government recently donated N17.8 million for the treatment of albinos with cancer at the National Hospital, Abuja. In addition, TAF is the first albino foundation in the world working with United Nations Children’s Fund. As a result, it gets support from the international community.

Experts classify albinism according to which gene mutated and caused their condition. The various types have their unique characteristics: Oculocutaneous albinism is classified into: Oculocutaneous albinism 1, Oculocutaneous albinism 2, Oculocutaneous albinism 3, Oculocutaneous albinism 4, X-linked ocular albinism, Hermansky-Pudlak syndrome and Chediak-Higashi syndrome.

Oculocutaneous albinism is caused by a mutation in one of four specific genes. This type of albino has problems with their visuals, skin, hair and eye colour. Specifically, oculocutaneous albinism 1 has mutated gene on chromosome 11. They are usually born with white hair, blue eyes and white skin. While some later produce adequate melanin for medium blond or brown hair, others never do. Eye colour sometimes changes. While skin might tan, it typically does not change the colour. Oculocutaneous albinism 2 results from a mutated gene on chromosome 15. It is most common among sub-Saharan Africans and African-Americans. At birth the individual skin is light to white brown, depending on lineage. Their colour is usually blue-gray or tan, while the hair might be yellow or red. For albinos whose lineage is from Northern Europe or Asia, their skin resembles that of other family members but is slightly lighter. Once they are exposed to sun, they can develop freckles, moles or other skin marks.

Oculocutaneous albinism 3 could be linked to mutation of chromosome 9 gene. It occurs mostly in black South Africans. Persons with this albinism type have reddish-brown skin, reddish or ginger hair and brown or hazel eyes. Symptoms of Oculocutaneous albinism 4 are similar to those associated with type 2. But it is a rare type of albinism. It is usually found among the Japanese and results from a gene mutation of chromosome 5.