Unraveling albinism

In many African communities, albinism is viewed as a curse especially when the child is born to parents who do not have physical symptoms of the condition.

It is, however, an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes. It occurs in all racial and ethnic groups throughout the world.

“For a child to be born with this congenital condition both parents must be carriers of the albinism gene. It is possible to have no outward symptoms of albinism but still be a carrier,” says Dr Prabha Choksey, an ophthalmologist with an albinism foundation to her credit.

Because both parents carry equal responsibility in giving birth to a child with albinism, there is therefore no one to blame and Dr Choksey says all these children need is love and care.

“Persons with albinism can live perfectly normal lives if given adequate protection from the sun’s ultraviolet rays. Because their skin lacks melanin — which is a natural protective pigment, they are susceptible to blisters on the skin and cracks in the eyes,” she says.

Dr Choksey says those with albinism should protect their skin, especially when out in the sun, by wearing protective clothing, hats and applying sunscreen lotion that has high Sun Protection Factor. They should also shield their eyes with prescribed photo chromatic eyeglasses.

When it comes to vision, people with albinism have problems that are not correctable with eyeglasses. While not all are visually impaired, many have low vision.

It is the abnormal development of the retina and abnormal patterns of nerve connections between the eye and the brain that cause vision problems. In fact it is the presence of these eye problems that defines the diagnosis of albinism. 

Dr Choksey says despite this, students with albinism should not be forced to study braille since this not only slows them down but lowers their self-esteem with negative impact on their performance.

“Doing this narrows down their career choices since students using braille are not allowed in Kenya’s education system to do science subjects because transcribers have challenges in translating science.

All these students need is to sit in-front of the class during lessons, to have access to high contrast written material, large type text on blackboards and in books. If using computers, large character display is important,” she says.

Grace Nzomo, 22, is a final year Psychology student at United States International University. She is a beneficiary of the Dr Prabha Choksey Foundation and is proof one can live a normal life despite having albinism.

“I have had to overcome many hurdles including being forced to study braille in high school despite seeing clearly with my photo chromatic spectacles. I would have score better than the B I got in KCSE,” she says.

Grace is immensely grateful to her parents, both normal skinned, for taking her and a younger sister also born with albinism in their stride. “They brought us up with love and understanding and took us to integrated schools,” says the girl who also works part time at the resource department of NIC Bank.