Malawi July 2019, I meet Asiad and Anifa, two sisters of 18 and 12 years old. The older one, Asiad, works on a farm and Anifa still goes to school. When I approach them their heads are bowed. Asiad will slowly lift up her eyes whilst Anifa keeps staring at the ground, afraid to look up. Although they have watched me and know that I am coming, they will not look me in the eye, scared to be seen. Asiad is the only one who responds to my greeting and I notice that her eyes are twitching.
There are also strangely shaped marks on her skin that look like they have been burned. I ask more questions and we talk about our daily lives as teenagers, high school and all that stuff. Although they were shy at first, Asiad and Anifa blossom out and I learn about the beautiful young women they are. Full of ambitions and eager to learn. However there is an uncertainty in their voices and anxiousness in their eyes, because of an invisible weight that they carry with them. This makes it difficult for them to receive proper education, find work and build a future. Again and again they have to fear for their lives and watch over their shoulders wherever they go. When I would pass these two sisters in Maastricht on the street, I would probably not even bother to look up. But in Malawi they are watched by everyone. And all that for the colour of their skin.
Asiad and Anifa have albinism, a genetic disorder which causes an insufficient production of melanin in the skin, hair and eyes. Melanin is a pigment which is formed in the skin when exposed to UV light. It protects the skin against damage from UV radiation which can cause damage to the DNA in the skin, which can lead to melanomas (skin cancer). Albinism occurs around the whole world. Melanin is generated by the process of melanogenesis in a specific cell type called melanocytes. Melanin is made from the amino acid tyrosine which is synthesized by the enzyme tyrosinase. When there is insufficient production of melanin the skin is more harmful to be damaged by UV light, which can cause melanomas, a type of skin cancer. The occurrence rate of albinism in North America and Europe is 1 in 20,000, but in sub-Saharan Africa, there is an increased frequency with 1 in 1500 to 5000. A mutation in the P-gen will cause a lack of tyrosine in the melanocytes resulting in a lower to no production of melanin within the cell. This causes severe burn marks because there is very little protection of melanin in the skin against UV radiation, which will lead to skin cancer. Because there is almost no pigmentation in the skin, it will not be protected against UVA and UVA light. Therefore, people with albinism burn fast and heavy. Resulting in that their skin is unprotected and will be prone to developing melanomas (skin cancer). Especially in sub-Saharan Africa this is a big problem since people with a low income there often work long days on the land unprotected from the sunlight. For these people, there is a lack of basic clothing items and sunblock, like long sleeves, closed shoes and hats to cover as much skin as possible. This lack often results in heavy sunburns and melanomas.
Aside from the biological consequences that people with albinism in sub-Saharan Africa face, the social problems are even worse. The body parts of people with albinism in sub-Saharan Africa are believed to have magical powers. During times of political instability or when people have a disease, this is believed to cure them or give more security. Therefore these people are sold by family members, hunted down, tortured and killed. There is no difference made in gender, age or descent. Even babies and children are being sold by their own parents.
I met this young mother with her new born albino daughter. She has walked more than 20 kilometres to get here and to receive help. She holds her daughter very tight, like a lion, ready to protect her at any cost and she has every right to do so. Her husband has left her because she carried a baby with albinism. He believed that the child is not his and has tried to sell her, his own daughter. She was lucky enough to catch him in time and to protect her daughter from being molested for her skin while she is just a few weeks old.
This extreme violence against people with albinism is caused by the belief in black magic in a large part of the population in sub-Saharan Africa. They believe that the body parts of people with albinism will give them more power and luck during difficult times, such as during elections. For women this is even worse because they are raped and married off to men who seek for their supposed luck. It is common belief that unprotected sex with people with albinism can cure diseases such as HIV and AIDS, whilst this will only infect the victim.
For a few years, these shocking events have been getting more attention with articles such as Six Tanzanian children killed 'for body parts' by the BBC or The Hunted by the New York Times. The organisation Under The Same Sun is an organisation backed by the United Nations that helps people with albinism in Tanzania and other parts of Africa. This organisation reported more than 218 murders and 415 assaults against people with albinism in sub-Saharan Africa since 2012 till october 2021. The numbers are presumably even higher, because many cases are not documented. Amnesty International also released a pressing report about these cases in 2016 called: ‘we are not animals to be hunted or sold’.
Every albino has their own story, some even more shocking than others, but they all share the same burden on their shoulders. It is important to know their stories and share their message, to bring more awareness to this topic and educate inhabitants of sub-Saharan Africa about the genetics of this disorder. On the other hand, it is also important to share the beautiful smiles and hopes of people with albinism. Because they have the same hopes, dreams and goals as the rest of us. To Asiad and Anifa, that they may have a more carefree future.