Stichting Josephat Torner Foundation Europe

What is albinism

Albinism is a genetically inherited rare condition with lack of pigmentation that effects mainly colors of skin, hair and eyes.

Low vision and skin cancer

Melanin deficiency causes complex visual impairment, altering retinal development and nerve connections to the eye; it also eliminates natural defences against sun damage and places people with albinism at heightened risk of skin cancer, especially in hot countries. Despite these health implications, albinism is not a death sentence. People with albinism are of equal intelligence to anyone else, and no scientific study has ever linked the condition to impaired brain function or mental processing in any way. The complex visual impairment caused by albinism is non-degenerative, and does not worsen over time; vision can on the contrary be improved with glasses, low vision devices, and adjustments to lighting or seating position. The threat of skin cancer can likewise be managed by minimising exposure to sunlight (particularly around midday), applying sunscreen, and wearing long-sleeved clothing and wide-brimmed hats outdoors.

About people with albinism in Africa

In many African countries, the persecution of people with albinism (PWA) is caused by the two-sided contradictory belief that, possessing a body part of PWA’s will bring you luck and fortune, while an albino baby will bring a curse and bad luck to the family where he/she is born into. Due to this distorted misconception, people with albinism are not only stigmatized and discriminated, but also hunted, killed and dismembered and even their graves are dug up in the search of bones and any leftover of body parts. Local witchdoctors make medicines with body parts with supposedly magical powers. In the last 10 years, countless attacks have taken place, most of which are unreported, as they occur in remote areas in the night and bodies are dumped in the woods. Tanzania scores highest in the birth rate of people with albinism. It is approximately one out of 1.400 while it is one out of 20.000 in Europe. In January 2015, the Tanzanian government has arrested more than 200 witchdoctors. Since a murder of a baby in Geita early 2015, most of the children with albinism the Lake Victoria Region has stopped attending schools due to their fears of being kidnapped and murdered. Currently Tanzania counts 28 government-run shelters for children with albinism,  however these children are separated from their families (sometimes family members themselves are involved with crimes) and poor hygiene at the shelters makes the living conditions often appaling.

People used to call us "zero-zeru" which means ghost