On 13 June 2020, CBM celebrates International Albinism Awareness Day. Our projects worldwide focus not just on medical assistance, but also on broad education and awareness-raising. Many people affected by albinism are more concerned about the exclusion they experience than the physical ailments. CBM advocates for their inclusion and active participation in all projects, so that they have the same opportunities as everyone else.
14-year-old Assan lives with his parents and his younger sister in their family house in Makoumbi, Cameroon. His parents are farmers and they sell their farm produce in the village market. Their home is a three-room mud brick apartment without electricity or running water. When the public taps in the village run dry, they fetch water from a stream nearby.
Assan is affected by albinism and has severe low vision challenges. Albinism is a genetic defect where the body is unable to produce or distribute melanin, a natural pigment that gives colour to hair, skin, and the iris of the eye. Most individuals with albinism like Assan, do not have clear vision due to an underdevelopment of the central part of the retina. They are also very sensitive to bright lights, and have an increased risk of contracting skin cancer.
But that is not all - in many African countries, people with albinism are in permanent danger because of their different appearance. Time and again, people with albinism are the victims of deadly attacks. There is a widespread superstition that body parts of people with albinism bring happiness or wealth.
Assan squints his eyes often and says it is hard for him to see in bright light. He has lived with this challenge all his life. There is no eye hospital in his village, and he has not received much medical attention. The closest eye hospital is a four-hour drive away.
I always have to close my eyes when in bright light, it is very uncomfortable to walk around or play on sunny days because I cannot see well especially when people or objects are far.Assan
Assan’s daily life
At 14, Assan is less confident and less assertive than his peers. He is in class four in primary school while his age mates in the village have advanced to secondary school.
Assan says, “I have repeated many classes before because I don’t see well so I do not copy notes well in class”. In class, Assan struggles to see the blackboard. That’s why he brings a kitchen stool with him to school, sitting just a few inches away from the blackboard when it’s time to copy notes. His class teacher makes an extra effort to accommodate Assan’s needs.
During break, Assan often sits to the side and watch his friends play if it is a sunny day. When the sun is not too bright, he joins his friends, but is routinely excluded from football games because of his low vision challenges.
Assan dreams of becoming a medical doctor when he grows up. He says, “I will love to be a doctor and work in a big city and help sick people”. However, Assan’s low vision and challenges in school stand in the way of this dream.
In class, Assan sits few inches from the blackboard to copy his notes and even then, he still struggles to see. His notes have errors and I have to pay extra attention to him in class.Mr Poukowo Michel, Assan's class teacher
Medical assessment and next steps
In January 2020, Mr Tatah John, a local CBR field worker from CBM partner SEEPD in Cameroon heard about Assan’s case and paid the family a visit. John says, “During my visit, I had a long conversation with the family. It was obvious that two things stood in the way of Assan getting the medical intervention he needs – poverty and ignorance”.
John explains that the family’s economic situation is a big hindrance in accessing health care. He also observed that the family was not aware of the assistive devices that could be used to enhance Assan’s vision. He educated the family on the tools that enable people like Assan to have almost normal vision - a magnifying glass for reading, binoculars to recognise the letters on the board, or glasses that Assan can use to better navigate outdoors. After hearing about these exciting options, Assan’s family agrees to bring him to the hospital for an eye check-up.
At this stage, the main obstacle that remained was the money to pay for Assan’s bills at the hospital. The CBM partner hospital Mbingo Baptist Hospital in Cameroon offered to help cover the cost of the hospital bills.
Assan risks facing a lifetime of challenges with low vision if a hospital does not intervene. Very soon, Assan’s parents will bring him to see the low vision therapist at Mbingo Baptist Hospital in Bafoussam. After his assessment, Assan will receive suitable assistive devices to help him see better.