People with albinism live in constant danger and exclusion from daily life.
Every year, 13 June is a reminder that people with albinism deserve to have their rights respected. Yet they continue to live in danger, face discrimination and have their lives and safety violated.
People with albinism are harassed and even killed in some regions because of superstitious beliefs that their body parts bring good luck and wealth. In some parts of Africa like Malawi, Mozambique or Tanzania, they are called "money", a dehumanising price tag attached to their body parts.
On this International Albinism Awareness Day 2022, CBM is calling for special support for people with albinism so that they are not condemned to a life of hiding in society.
Little Aisha from Uganda is cut off from participating in the life around her.
All-day long, four-year-old Aisha sits in the shade and watches other children play. Only after sunset can the girl move freely outdoors. Aisha has albinism. She is the child of parents with black skin. Therefore, it was a surprise for them when Aisha was born with white skin.
What is albinism?
Albinism is a rare, non-contagious, genetically inherited condition that occurs worldwide regardless of race, ethnicity or gender. People like Aisha lack the pigment melanin, which protects them from the sun and gives their eyes, skin and hair their colour. The consequences of the disease are many. Most, like Aisha, have poor eyesight and are extremely sensitive to the sun. There is also an increased risk of skin cancer. Both parents must carry the gene for albinism in order for it to be passed on to their children, even if they themselves show no signs of the condition.
The prevalence of albinism varies worldwide. According to the Office of the High Commissioner for Human Rights, estimates vary from 1 in 5,000 to 1 in 15,000 people in sub-Saharan Africa, with a higher prevalence of 1 in 1,400 in certain groups in Tanzania and as high as 1 in 1,000 in Zimbabwe. In Europe and North America, the disease is estimated to affect 1 in 17,000 to 20,000 people.
Family under persecution
But that's not all: in many African countries, people like Aisha are persecuted because of their different appearance. They often become victims of exclusion.
This was also the case with Aisha. She was shunned by her neighbours. Just like her younger brother, who also has albinism: "People said that my children did not fit into the community," her mother Faith reports, "and that they were a curse because I did something bad as a child."
The single mother, who owns a small fruit stall, feels this rejection herself every day. "When some people see the children at my stall, they do not buy from me. It hurts me and my business a lot," she explains. To protect Aisha, her mother accompanies her everywhere she goes: "I am afraid that someone might hurt my daughter if I am not with her," Faith says.
Special glasses can help
"People with albinism need our special support," says Dr Rainer Brockhaus, the Chief Executive Officer of CBM. "In our projects, we focus on educating the population well. We also make sure that those affected receive medical help and have the same opportunities at school like all other children."
However, some children have such poor eyesight that they hardly have a chance to attend school.
A staff member of the Mengo Eye Clinic, which is supported by CBM, heard about Aisha and her family. He examined them free of charge. At Mengo, Aisha and her brother were fitted with special glasses with dark lenses so that they are less dazzled and can see better. They were also given caps and sunscreen to protect their sensitive skin. The help Faith has received through CBM strengthens her children's health and the whole family's self-confidence. She is confident that her daughter will soon be able to go to school and learn to read and write. Just like all the other children.