World Vitiligo Day

To many, June 25th is just another day on the calendar. But to about 100 million people in the world, on this day they get to celebrate all the people living with Vitiligo, a skin disease characterized by white patches, ranging from a few specks of depigmentation to complete depigmentation. However, this is not to be confused with Albinism. In the latter, melanocytes are present but do not function properly, whereas people with vitiligo are born with a normal pigmentation in their skin and hair, but with time the melanocytes die.

The causes of vitiligo are still unclear to date, but factors such asย stress, exposure to certain chemicals and drugs, and severe sunburn may trigger or worsen it.

Vitiligo Day was first celebrated in 2011, with the aim of raising awareness about the disease and the social impact it has had so far on the people affected by it, including rejection, bullying, and discrimination. An online petition to get the United Nations Secretary-General to officially recognize June 25th as World Vitiligo Day was started, and has so far garnered 503,000 signatures.

In Kenya institutions like VISOKE (Vitiligo Society of Kenya) exist to not only restore normalcy, but to improve the quality of life of persons living with Vitiligo, and promote a positive perception of vitiligo within the country.ย 

In September 2016, I was introduced to 63-year-old Jairus Ivayo. If you’d have asked me I’d have told you that he was well into his 30s, based on how he carried himself. He was very soft spoken and as I got to know him better, I discovered that he was a man of few words.

His vitiligo story is truly heart-breaking. Jairo had been living with his second wife for 3 years back in 2010, when his marriage fell apart. He saw it best for he and his wife to part ways when he found out about her infidelity. This however did not sit well with her, and that is when all hell broke loose. Jairo’s wife swore to get revenge, and revenge she did get. She ambushed him at his door one morning with an unknown liquid in a bowl, and fled. This definitely came as a shock to Jairo but he never thought too much into it, especially after he had rinsed off the liquid from his face.

One week later, he began to experience a burning sensation all over his body. This was then accompanied by redness, which turned into skin discolouration. He was terrified and decided to seek medical advice at a medical clinic in the Nairobi CBD. The doctor carried out some tests but could not quite put his finger on it. Nevertheless, he still went ahead to prescribe some cream, the size of a toothpaste tube, to him. But because the medicine was too costly for Jairo, he discontinued its use.

Since then, he has not made any more hospital visits and has instead found inexpensive ways of managing his condition. His skin is only able to handle warm water. His way of dressing has also had to change, and his wardrobe now consists of caps, long sleeve shirts, khaki trousers and jackets. His entire body needs to be covered especially in the daytime, as the sun’s rays causes his skin to burn and itch.

Jairo’s life has never been the same since the fatal accident. On top of losing his family, he lost his job as a security guard, he has lost friends and most recently he lost his home to a fire. His survival so far has been solely dependant on well-wishers and kind friends.

Jairo Vitiligo Project-8
A frame of Kawangware, a slum that is 9 kms from the Nairobi CBD, and located between Lavington and Dagoretti in Nairobi, Kenya.

 

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Jairo shares his Vitiligo story in the comfort of his home, whose sitting room and bedroom are separated by bed sheets and clothes.

 

Jairo Vitiligo Project-12
An old photo of Jairo in his midlife before he got vitiligo.

 

Jairo Vitiligo Project-9
A portrait of Jairo highlighting his face, a prominent part of his body that has been affected by the vitiligo disease. He wears a cap to shield himself from the sun, as well as avoid cold stares from passersby every other day.

 

Jairo Vitiligo Project-15
Jairo points out where his former house, that was razed to the ground by a neighboring fire, used to be. Beside him are remnants of the temporary structures that were once homes to several people.

 

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Jairo contemplates outside his current house. His rent together with food and clothing comes from well-wellwishers and donations made to his church.

 

Jairo Vitiligo Project-13
Children busy at play while Jairo relaxes at his favorite spot right outside his compound.

 

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Despite all that Jairo has been through, he still manages to smile.

As we commemorate this 25th day of June, I would urge us all to be a little kinder to people with vitiligo. Avoid cold stares and instead greet them with warm smiles when your eyes meet. Treat them as you would treat all other people because they are human beings just like you and I.

Happy World Vitiligo Dayย ๐Ÿ’œ.

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9 thoughts on “World Vitiligo Day

  1. Well in Nimu. I like that your work, goes beyond great pics. There’s creation of awareness, sensitization on issues, as well as showcasing the beauty of Kenya and it’s people. Endelea kwa moyo uyo huyo.

    Like

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