Health Areas

Albinism made me conquer my limitations

Attitude and enthusiasm play a big part in his life.

But this goes back to about three decades ago as he grew up in a quiet close-knit village in Kivaalala in Makueni County. As a young boy, pride and passion ensured he was always the first on the football pitch and the last one out. As a goalkeeper, he was unusually agile, quick and majestic. He was popular among his peers due to his defense skill.

However, his mother always wore a troubled face whenever he returned home in the evenings. The skin on his face, hands and legs would have unusually pink patches. These were sunburns from an active day of play. It took her daily and religious interventions to remind him to protect his skin from the intolerant rays of the sun.

“Your skin needs special care,” he remembers her words. Sunscreen was a luxury. He also grew up watching how his elder brother and younger sister took extra care to cover their hands and feet whenever they were outside. They also have albinism. Another cousin also has albinism hence the three siblings never felt any different. It wasn’t a coincidence that there were more children with albinism in the village.

Daniel has developed a comprehensive access database

He was also the unique boy who wore glasses. Daniel takes a second to explain the marvel of his spectacles to his friends.

“Due to sensitivity to light from albinism, I had to wear spectacles when I was only nine years old to improve my vision. Being bespectacled earned me lots of friends, curious to find out why I had an ‘extra’ set of eyes,” says Daniel with a light touch but emphasizes the importance of optical checks for all persons with albinism.

That colour of eyes is determined by the amount of melanin pigment in the iris—the colored part of your eyes. When this pigment is missing, a person experiences photophobia which is a discomfort or pain to the eyes due to light exposure. Eye health experts estimate that this kind of sensitivity is common in about 95 per cent of persons with albinism due to the lack of the melanin pigment in their eye.

Depending on the amount of vision affected, some persons with albinism may need hand-held magnifying devices, or even small specially-constructed for reading text on a book or screen. Screen magnification software or hardware can help while using a computer.

His vision never kept him away from football.

“Ironically, a goal keeper needs to have very good vision. It was a tough balance to put my spectacles aside and hope that no ball made it into the net,” Daniel shared. He was in a dilemma. Was it wiser to keep the spectacles aside to save them from breaking yet give the opponents a fat chance to score against them? Luckily he won on both ends, he kept his spectacles intact and was celebrated as a tactful goalie.

When Daniel set-off to school he was keen in his studies and developed an interest in the inclusion of persons with special needs not only in school but also in the community. Today, one of his key roles at Sense International is to encourage the inclusion of persons with disabilities in the home, schools and community. He is also specific on the institutional assistance needed for pupils and students with albinism. These include;

  • Large type texts to enhance reading
  • High contrast reading material
  • Computer with large character display
  • Copies of the teachers notes for close-up reading
  • At least 30 minutes extra time during examinations
  • Permission to sit in front of the classroom

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 and extreme nearsightedness or farsightedness.

He has a beautiful wife, a son and daughter whom he says are his motivation to keep creating awareness to include persons with albinism in all community activities, in the learning institutions and at the workplace.

As a young man, Daniel was an unusually agile, quick and majestic goalkeeper

His role models are nominated legislator Isaac Mwaura who is also the national coordinator of the Albinism Society of Kenya and Microsoft chief executive Satya Narayana Nadella. Daniel is passionate about technology.

Daniel nurtured the passion for technology at a young age. “Since I was 10, I repaired those small faulty radios and digital clocks in the village. It was such a joy. I never charged for my services,” Daniel reminisces.

And it payed off eventually when Dan and his roommate at Kenyatta University began a side hustle of repairing desktops and laptops. A decade later, he was still infatuated by technology and he became part of the Windows insider program, a select group of people around the world who had exclusive access to Windows 10 features and shared their feedback directly with the Microsoft engineers.

“I have always admired the engineers at Microsoft especially how they share the organizations’ objectives with its users and fanatics like me. They allowed us to shape the future of the operating system used by millions in the world,” Dan added. The peak of my joy was when I was invited to attend the launch of Windows 10 in Kenya on July 29th 2015, getting a chance to meet and share with the CEO himself. I was excited to share a platform with my mentor,” Dan described the life-changing moment.  “Today, the technology bug has stuck. I developed a comprehensive access database that is widely used in at work for data entry and analysis,” Daniel added.

What is albinism?

The word albinism is gained from the Latin work Albus. In English albums means white. It is a genetic condition characterised by lack of a pigment called melanin in the skin, hair and eye.

Skin specialist Dr E.N Kamuri notes that most people with albinism are sensitive to sun exposure and are at increased risk of developing skin cancer. “Due to the lack of melanin, people with albinism are more likely to suffer the wrath of the direct exposure ultraviolet radiation exposure on their eye and skin. They should take care of their skin by applying sunscreen and also wearing long sleeved clothes, long pants and wide-brimmed hats,” Dr Kamuri added.

The sunscreen is very specific for persons with Albinism, Dr Kamuri noted. “It should have sun protection factor (SPF) of at least 30 that protects against both UVA and UVB light,” he added.

There are two main types of Albinism;

  • Type 1 albinism caused by defects that affect production of the pigment, melanin.
  • Type 2 albinism due to a defect in the “P” gene. People with this type do have a slight amount of skin coloring at birth.

Nystagmus is an eye condition that is also common among persons with albinism. The eye has rapid, involuntary back-and-forth movement, hence the need to see an eye- specialist. About 95 per cent of persons with albinism have vision problems caused by the lack of the melanin pigment in their eye.

In some African communities, myths abound that persons with albinism possess magical powers leading to attacks or their killing for their body parts.

Recently the United Nations has spoken about the human rights violations, including a recent case in Malawi and urged the government to urgently address the root causes of these attacks and to strengthen nationwide campaigns to raise awareness, conduct robust investigations and prosecutions in all cases. The UN further called for stakeholders double their efforts to effect immediate measures to protect persons with albinism.

For Daniel, albinism gave him a platform to rise beyond the odds, to inspire young men and women to dare become the best.

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