Albinism in Africa

Two weeks ago I walked to the village of Got Kachola with some visitors from the US. As often happens, we attracted a large crowd of curious children around us who yelled at us “goa picture” (take our picture). As we set up to take a photo we heard the familiar voice of our co-worker Geoffrey Ochieng calling out to us. Ochieng, as he is known, insisted on taking us on a walking tour of his village including his own store front pharmacy. Kenya allows anyone to be a “chemist” and buy and sell pharmaceuticals including medications for malaria, antibiotics and even Valium over the counter. Although we have strong feelings about the safety of this practice, it is legal here so we can only use education to try to guide consumers’ usage. Ochieng had 3 people in his community on whom he wanted to consult so he brought them to me for a brief consult.

The first man had advanced HIV disease, a severe oral infection and other complications. I did a brief exam and advised him to come into the clinic to see me ASAP. The second patient was an infant with severe wasting disease. She was a 2 year old who was the size of a 6 month old. She had the classic symptoms of malnutrition with sunken eyes, bony arms and legs, a big belly, and sparse reddish hair. Although her mother was trying to feed her some porridge she was too weak to eat. Ochieng told me the child’s father had recently died so it was very likely that she was also infected with HIV. She would need hospitalization in order to save her life but as we later learned, she died before getting care.

The last child was a school aged boy with albinism. Albinism is a rare genetically inherited disorder which results in a lack of pigmentation in the hair, skin and eyes. In North America and Europe it is estimated that 1 in 20,000 people have some form of albinism. I was not able to find the statistics or Kenya but in Tanzania it’s much more common, affecting approximately 1 in 4,000 people.

As a child with albinism living in equatorial Africa he is exposed to high daily doses of sunshine that burns and blisters his skin. This little boy had burnt and blistered skin on all exposed areas of his head, neck, face, arms and feet. He was squinting in an effort to see us because his eyes are also affected. We offered to obtain a hat and sunscreen for him and give it to Ochieng the following week.

On Monday, Paul was talking about him with one of our co-workers and he learned some vital information about how the African cultures view albinism. First, we learned that any hat we gave the boy would be stolen within a day by other children or even adults in his community. It was suggested that we do some community education about albinism at his school first. So this past Tuesday we went to his school to talk to his teacher, classmates and grandmother.

Paul explained why we have pigment in our skin and how it protects us from the harmful effects of the sun. He showed the children the difference between the skin color on his forearm and his upper arm. He stressed that the boy was a normal child who just happened to be born without pigment. We gave the boy the hat (donated by our US visitor, Jack) and applied sunscreen to all his sun exposed skin. All the children made a pledge to help their classmate keep possession of his hat. Our translator Daniel offered to talk to the community at a funeral the following Saturday.

(this next section may not be appropriate for children to read)

We also learned about how albinism is viewed by some people in parts of Africa. When we researched this on the Internet we read shocking stories of murders of albinos living in Tanzania in recent years. An albino spokesman said there was a belief that the condition was the result of a curse put on the family. Some people in Tanzania think albinos are a kind of ghost-like creature.

We also read that there is a rapidly growing industry in the sale of albino body parts. Some people in Tanzania believe that the body parts of people with albinism have magical powers capable of bringing riches if used in potions produced by local witchdoctors. In the last year official reports indicate that 26 persons with albinism have been brutally murdered and their body parts hacked off and sold to witchdoctors. Though the official count is 28, leaders in the albino community believe the number to be over 60.

Some recent reports indicate that body parts are also being exported outside Tanzania. In one instance a Tanzanian trader was caught with the head of an albino baby on his way to the Democratic Republic of Congo. He told police a businessman was going to pay him for the head by its weight.

On September 4, 2008 the European Parliament passed a resolution condemning the killings and called for killers to be prosecuted. . A crackdown on the witch doctors who encourage the killing of people with albinism was also announced in TZ and as part of this, a 48-year-old woman with albinism, Al-Shymaa Kway-Geer was appointed an MP. Ms Kway-Geer was herself victimized when young. "When I was at primary school, people used to laugh at me, tease me - some didn't even like to touch me, saying that if they touched me they would get this colour," she said. "People used to abuse me on the road when I took the buses to school. They would run after me - crowds of kids following me - shouting 'zeru, zeru'." "Zeru" is a Swahili word for albino. Tanzania's albino society says that traditionally, this is a word for ghost-like creatures and is derogatory. Since the beginning of 2000, the word has been banned.

While there have not yet been any prosecutions regarding the recent spate of murders, 172 were arrested in connection to the cases - 71 of whom said they had been told by witch doctors to bring them albino body parts. They remain in custody.