“Children with albinism feel safer walking to and from school, are making friends and doing well in their studies.”
Lacking protective pigment at the back of their eyes, people with oculocutaneous albinism all experience visual impairment of one kind or another.
These include extreme sensitivity to light (photophobia), involuntary eye movements (nystagmus), blurring caused by imperfection in the curvature of the eye (astigmatism) and general poor vision.
These issues are currently overlooked and neglected in Uganda. Children and teenagers with albinism struggle to study at school, often have to repeat classes and lack confidence in keeping up with their peers.
We have supported sixty children and young people in 2018, aged between six and twenty-one, who now have significantly improved vision. This is helping them to reach their potential in school and college and also ensures they feel more self- assured and safe in their daily lives.
Expert assessment is required to assess the best intervention required to improve vision for people with albinism. These include prescription photo-chromic (react-to-light) spectacles, monoculars and magnifiers.
The provision of vision aids is just one part of ensuring that children with albinism can reach their academic potential. These precious resources must go alongside awareness-raising amongst parents, staff and pupils so that children with albinism are supported appropriately in the classroom, can sit near the blackboard and away from bright light.
We also work with teaching staff to ensure that children with albinism are allowed to wear wide-brimmed hats and long sleeved uniforms to keep them safe from the sun while in the playground.
More inclusive schools and better understanding of albinism is having a significant impact on the attitudes of wider communities in the region. Children with albinism feel safer walking to and from school, are making friends and doing well in their studies.
If children with disabilities or albinism do not have the chance to learn with their peers, this reinforces stigma and false beliefs. Sitting alongside other children and showing that we too can learn and contribute, is the best way to change attitudes. Disability is not inability: when we are given the opportunity, we can achieve anything.