What children with albinism need to do before they are seven years

 

Models who took part in the Mr and Miss Albinism beauty pageant in October last year at the Carnivore restaurant in Nairobi. The event was to help create awareness to combat stigma and discrimination. [File, Standard]

All children with albinism should see an eye specialist before they are seven years to improve their social and academic interactions. Prabha Choksey, a consultant eye specialist who also provides treatment and runs awareness campaigns on albinism, has called for a more inclusive optical approach for learners with albinism.

Due to lack of melanin, people with albinism are more likely to suffer the effects of direct exposure to ultraviolet radiation on their eyes and skin.

According to Dr Choksey, some of the other issues that persons with albinism have to deal with include photo-phobia, decreased visual acuity, extreme sun sensitivity, and skin cancer.

Choksey explains that the colour of the eyes is determined by the amount of pigment melanin in the iris — the coloured part of your eyes.

When this pigment is missing, a person experiences photo-phobia, which is a discomfort or pain to the eyes due to light exposure.

Early eye care

“About 95 per cent of persons with albinism have vision problems caused by lack of melanin pigment in their eye. But this does not mean that they are blind,” said Choksey.

She cited the critical role of early eye care interventions for persons with albinism.

She estimates that three of every 10 patients with albinism that she sees have shortsightedness while the rest have other vision problem.

She has treated about 950 persons with albinism in the past three decades.

“With the right optical support, they end up being very successful and dependable. You will be amazed at their capabilities in the classroom and beyond,” she said.

Dr Choksey cited nystagmus, a condition where the eye has rapid involuntary back-and-forth movements, common in persons with albinism.

Depending on the degree to which vision is affected, some persons with albinism may need hand-held magnifying devices or even small specially-constructed glasses for reading text in a book or on a screen.

Screen magnification software or hardware can help in the use of a computer.

Right treatment

According to Dr Choksey, with the right treatment for their optical challenges, learners need little educational support and in most cases, they do not need to be enrolled in schools for the visually impaired.

“Learners with albinism need to positioned at the front seats in the classroom and given reading devices and from here you will watch them have impressive academic performances,” she said.

She added that they should be included in classrooms with learners without special needs.

Albinism is a genetic condition characterised by lack of a pigment called melanin in the skin, hair, and eye.

Instead of having dark skin and black hair, people with albinism are blond with pale skin because of lack of pigment.

Albinism may also present with sight problems which include the inability of both eyes to stay directed at the same point or to move in unison, known as strabismus.

Other solutions

Extreme nearsightedness or farsightedness may also be experienced.

Nominated legislator Isaac Mwaura hailed the proposal to give more specialised eye treatment to children with albinism, adding that this would help to improve their attendance and performance in academics.

“Some of the eye conditions that affect persons with albinism include nystagmus and the fear of light, known as photophobia, which make it difficult to locate objects especially in a cluttered environment,” said Mr Mwaura, who is also the national coordinator of the Albinism Society of Kenya.

According to Mwaura, who is also a champion for persons with disabilities, including albinism, students and pupils with eye problems find it difficult to concentrate on their studies and in most cases are shy to speak out until a parent or teacher notices their struggle.

Shortsightedness, or myopia, leads to difficulties in reading content on the blackboard or in books. Students and pupils usually resort to survival tactics such as rote reading or copying notes from their desk mates, he added.

Mwaura suggested solutions to avert eye problems.

“We need to ensure that prescription glasses and reading devices are provided for each child with albinism,” said Mwaura in an interview.

Wide-brimmed hats help to sieve the light, hence enhancing vision and helping to avoid tears when the sun is high in the sky, Mwaura added.

Sunscreen with a sun protection factor of at least 30 that shields against both UVA and UVB light is another protective measure that protects the sensitive skin of persons with albinism.

 

The writer is health and medicine editor at The Conversation Africa.