A happy family of albinos

United States estimates indicate that one person in 17,000 has some type of albinism By Joan Mugenzi WHEN Sephrosa Nantale gave birth to twins 44 years ago, it was a rare set of twins. One of them was an albino. This was strange to her family because according to Nantale, they had no history of albinism. Perhaps this was the beginning of a lineage of albinos. This albino twin, Amina Babirye Namakula, got married in 1970 to a normal man but gave birth to three albinos and one normal child. Two of the albinos are boys and one is a girl. "It was God's will for the family and it is only Him who knows why He had that will for us," says Namakula, pensively. "We had never had any albino in the family," Nantale contemplates. For Nantale, the birth of an albino, marked the end of her marriage. Her husband got another woman and together they had five normal children. Nantale faced stigmatisation that goes with being an albino. The uniqueness of this condition leads to isolation. The experience resembles in many ways, that of any other disabled or minority groups. In relating to their families and society, persons with albinism at times will experience prejudice, rejection or frustration. They get ensnared in isolation. Only people groomed to have self-esteem and confidence will be able to confront some of these situations and look on life positively. Being prized and valued by those closest to them can be the foundation for a lifetime of self-esteem and inner strength. It worked for Namakula. Her husband was there for her throughout his life. He died in 1994, condemning Namakula to widowhood and loneliness. "My husband was so loving and caring," she reminisces. "We raised our children together but it was not a simple task," adds Namakula. She explains that albino children are delicate. She had her own troubles growing up. These children have to be under protection all the time. They need not be exposed to the sun rays. Luckily, she says, her husband was a motor vehicle mechanic so they could afford to look after their young children. "I did not have to struggle to fend for them," says Namakula. "I got everything on a silver platter. Life was good indeed. I did not even have to dig." Life took a dramatic change in 1994. With the death of her husband, she had to resort to the hoe while at the same time looking after her children. Though old enough, she did not want them to work under the sun or go to the forest to collect firewood because their skin would be bruised badly. On the contrary, her children sympathised with her. They wanted to help out whenever it was possible and refusing them to go to the garden or the forest did not work out. They resolved to work very early in the morning and by the time the sun got hot, they would be out of the field and all they were left with were indoor activities. And that is how they have managed to live with their condition. Namakula explains that whenever they are under the sun, their bodies get a burning sensation and the skin itches. "It is terrible. You feel like your skin is peeling off. So, we have to be extremely careful with ourselves." Fortunately, they have had many sympathisers wherever they have lived. "People like us. They always offer a helping hand whenever we get stranded," says Namakula. Her 20-year-old son, Kassim Nakabaale, says he has never been stigmatised whatsoever. "Teachers and pupils were always friendly. They used to call me mzungu and children would never run away from me," says Nakabaale. When they became orphans, his head teacher at St. Venevetia, Stephen Kasajja offered to pay school fees for him. He also took it upon himself to check on Nakabaale's health all the time. This went on until 1998, when Kasajja was transferred to Kakiri. Nakabaale then dropped out of school. From that time, he resorted to digging and petty trade. Recently, he got married to 17-year-old Aisha Nabukenya. "I realised I needed a companion so I could plan better. I am glad I found one now I can concentrate on other things," Nakabaale says, contentedly. It was not easy for him to get a wife. They were matched. Aisha's cousin told him about her and when he eventually got to her home, he was welcome. Namakula did not also decide for her soul-mate. At the age of 14, her father decided that she gets married to a 36-year-old man who had gone visiting to their home. But did they ever think of getting married to normal people? "Oh yes," replies Namakula. "When I started developing breasts, men would come home and ask to marry me but my father would refuse. I think my husband was a lucky man." For Nakabaale, it had never crossed his mind but he prayed to Allah for a normal girl. Namakula's first born, Abdullah Kiguli, has a normal girlfriend and they gave birth to a normal baby boy. One thing that is obvious about this family is that they are a happy family. They are friendly and they believe this is what has helped them win people to their side. Residents easily identify this family that lives up the hill. Even to a stranger, they talk with smiles and make you feel at home. Or better still, feel like their own blood. They say that once you have self-pity, you only draw attention. What any albino has to do is to accept the condition and lead their life. According to the Encyclopedia Britanicca, albinism is a condition caused by the interference with the process of the formation, migration and movement of the pigment substances to their intended locations in the body during the growth of the zygote. The encyclopedia states that another cause for albinism is lack of pigment cells, responsible for the manufacture of menaline, or hormonal stimulations, necessary for the production of the pigment cells. Albinism can also be induced by abnormalities of the pigment cell at sub-cellular level. The US National Organisation for Albinism and Hypopigmentation (NOAH) states that one person in 17,000 people has some type of albinism. With these statistics, it would mean that in Uganda where the population is estimated at 22 million, the number of people with albinism are 1300. But it is difficult to find statistics about them. In an interview with the New Vision last year, Dr. John Nsibambi, a private human skin specialist said the condition is mainly inherited from carrier parents. He said there are various types of albinism. Some people are partially affected, with only a few body parts such as eyes. This, he says, means that one of the parents was a carrier. Complete albinos have their entire bodies affected as a result of recessive abnormality of the pigment also carried by both parents to offsprings. In which case, both parents are carriers. People with this condition have white skins and hair, while their eyelashes are pink. Their eyes are unsteady, often roving, especially during the hot weather. The pupils often turn red, reflecting the blood in the unpigmented eye blood vessels. Dr. Nsibambi says albinos need to keep away from direct sunlight as much as possible to protect their skin. He advises that they wear hats, dark glasses, and keep a parasol (a shade device or umbrella). They should also wear clothes that cover the entire body to leave as little skin as possible exposed to the sun rays. There is currently no known method to correct menaline deficiency in the skin. Ends.