By Paula Odek
In a world where societal norms often dictate beauty standards, Andrew Clifford Okal is determined to be a shining example of self-acceptance and resilience.
Despite facing numerous challenges, his 13 years living with vitiligo have not made him to lose focus in life.
Instead, he remains determined fighting stigma and discrimination against people living with the skin condition as well as trying to change public perception.
Vitiligo is a long-term skin disorder caused by the loss of pigmentation resulting in pale white or reddish patches on skin. It sometimes causes inflammation in the eye and or in the ear.
Vitiligo occurs when the body cells called melanocytes die or stop functioning. These cells are responsible for producing melanin - the pigment that gives colour to the skin, hair, and eyes.
The disease affects millions of people around the world including in Africa and the disease sufferers face social discrimination.
Early signs
Growing up as an orphan in Kenya under the care of his grandparents, Okal embraced life with an unwavering spirit excelling academically and being passionate about exploring new things and ideas.
Okal, now 30, vividly remembers noticing the initial signs of vitiligo on his lips when he was in secondary school in 2010.
He thought it was an allergy but the small dots did not disappear soon as he had hoped. Instead, they began to expand and spread rapidly affecting his face, hands, and legs and he then became more worried.
‘‘I wasn’t born with vitiligo. But when I joined high school, my lips began to be reddish,’’ he tells TRT Afrika.
‘‘My peers could say I am camouflaging and others called me a car indicator,’’ Okal recalls being ridiculed by some of his schoolmates.
'Vitiligo beauty'
Undeterred, Okal chose to embrace his new look which he describes as ''unique'' and started an awareness campaign on the skin condition wherever he finds himself hoping to encourage those with it to remain resilient and also discourage the society from discriminating against them.
He adopted the motto "Vitiligo is Beautiful," staying strong in the face of huge public attention it attracts and the curiosity it sparks. He has chosen to focus more on his happiness than on the public perception of his medical condition.
Apart from discrimination and stigma in school and on the streets, Okal says he also faced other challenges including high cost of treatment and discrimination while seeking jobs after acquiring his tertiary education.
But he eventually got a job as a secondary school teacher in the city of Nairobi. Some of his curious students too often ask him about his skin disorder and he explains to them calmly what it really is and most of them are now used to it.
Greetings snub
‘‘If I do not use the sunscreen my face burns and turns reddish and swollen,’’ he says.
Okal dispels myths and misconceptions about vitiligo emphasising that the disease is not contagious. Vitiligo is simply a variation in skin tone and does ''not cause any physical pain or discomfort,'' he explains. He says some people avoid handshakes with him.
‘‘When I greet people by hands, they think I will transfer the vitiligo to them,’’ Okal says as he smiles. He cites this as one of the misconceptions and elements of discrimination he faces.
According to the Vitiligo Research Foundation, a US-based NGO, there are about 100 million vitiligo sufferers worldwide.
This organisation and a Nigeria-based NGO, Vitiligo Support and Awareness Foundation, have been pushing for the United Nations to recognise June 25 every year as World Vitiligo Day, which they both started marking since 2011.
Experts say anyone can get vitiligo, and it can develop at any age but for many people with vitiligo, the white patches begin to appear before the age of 20.
Vitiligo causes
‘’Vitiligo seems to be more common in people who have a family history of the disorder or who have certain autoimmune diseases,’’ the US National Institutes of Health, one of the world’s leading medical research centres, says.
Some of the autoimmune disorders that can lead to vitiligo or worsen it include Addison’s disease, pernicious anemia, psoriasis, rheumatoid arthritis, systematic lupus erythematosus, thyroid diseases and type 1 diabetes.
The main symptom of vitiligo is loss of natural colour or pigment, called depigmentation with the skin developing milky-white patches, often on the hands, feet, arms, groin and or face.
But these patches can appear on any part of the body including inside the mouth or nose.
Hair can also turn white easily in areas where the skin is losing pigment like on the scalp, eyebrow, eyelash, beard, and body hair.
When the pale white patches appear on only one part of the body it is called segmental vitiligo. There is also non-segmental vitiligo - that's when the skin disorder manifests on both organs - for example on both hands or both knees.
In rare cases, vitiligo affects almost on all parts of the body. This is known as universal vitiligo.
Scientists believe that vitiligo is an autoimmune disease. In this situation, the body immune system attacks and destroys the melanocytes instead of attacking external disease-causing organisms.
Treatment availability
‘’Researchers continue to study how family history and genes may play a role in causing vitiligo. Sometimes an event – such as a sunburn, emotional distress, or exposure to a chemical – can trigger vitiligo or make it worse,’’ the National Institutes of Health says.
There is no cure for vitiligo. However, experts say treatments, sometimes with medically-approved creams, can be very effective at stopping the progression of the disease and reversing its effects including helping skin tone to appear more even. Sunscreens also help in protecting the skin.
Although discrimination and social stigma make many vitiligo sufferers to develop low self-esteem or a poor self-image, people like Andrew Okal believe their resilience could make a big difference in reversing the negative trend.
‘‘We are people like you, it is just the skin tone,’’ Okal says, sending a message to those discriminating against people living with vitiligo.
