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Art from God: Living optimistically with vitiligo

 Julie Nasuju is living optimistically with vitiligo (Photo: J. Nasuju, Wilberforce Okwiri)

It’s beautiful, glorious and in every form, a privilege to have our creator draw beautiful patterns all over your body.

This is how people with the rare skin condition known as vitiligo should be viewed by members of the public. It is also how they should see themselves, or at least, how Julie Nasuju would like to define herself.

Vitiligo is a skin condition that causes some patches of skin to lose pigmentation. This happens when melanin-producing cells die, hence developing white patches on the skin.

The depigmentation happens gradually and therefore the patches grow bigger with time. According to Julie, this condition might not manifest at birth but later in life.

“The time I was getting to understand what my condition is I was around five or six years. I started noticing other kids were curious about my skin. They were coming to touch me because at that time it had spread to my fingertips, around my eyes, nose and years,” says Julie.

Her classmates from Westlands Primary were very curious since she was the only one of her kind. Some bullied her, others made jokes about her, while others were okay with her.

The bullying was so much that at some point she had to defend herself. “This girl used to make fun of me. Sometimes she would gather groups just to do it until one day when I got fed up and we fought, which I won.”

To prevent such an incident from ever happening, Julie lied to her high schoolmates that her skin was contagious. Since not so many people knew about it, it worked in her favour. Nobody bullied her or stole her things.

“Vitiligo is not contagious; neither is it a death-threatening situation. The biggest stigma that we face is more psychological than physical,” said Julie.

The 35-year-old mother of four beautiful children has suffered her share of psychological torture just because of her skin condition.

“I tried to have serious relationships four times, but they never worked and ended in different scenarios.”

She first gave her heart to a man whose parents did not like how she looked and they rejected her. This became the main reason why her relationships failed.

The other one became abusive, not letting her leave the house and demoralizing her. The hate was too much and it made her heart heavy so she left.

Her biological father reacted in an almost similar manner. Julie was brought up by her stepdad and she never knew who her real father was until she asked.

“I used to know him as Uncle Mdosi. At the age of 18, I was told he was my dad, I went out looking for him and things did not work out.”

In 2015, they reconnected and the rejection was even worse. He tricked Julie into doing a DNA test then told her that it failed, meaning he was not the father.

“My question was, will every person with this condition be rejected because of it? Will people keep harassing those with vitiligo because they don’t know what it is? So I started Royal Patches to create awareness about this condition.”

All the hate that she got birthed Royal Patches, an initiative that spreads love to all those with vitiligo, regardless of age and gender.

She went out searching for people with her condition and that is when she met up with the leaders of the Vitiligo Society in Kenya.

Another purpose served by Julie’s initiative is building people’s confidence. She says the people affected most are teenagers.

They have so many hormones to deal with in addition to identity crises while trying to create friends, an effort that is often in vain.

Julie used her modelling skills to bring out the beauty of vitiligo. This career started when a photographer took a photo of her during a wedding.

The photos spread and opened so many doors for her in the entertainment world. Her first shoot was with the Sauti Sol in a soundtrack called ‘Ebu Njoo’.

Her screen time has since then increased with her landing a main role in a Kenyan film dubbed ‘Dagoretti’.

“Let us see ourselves as art. We should be out there on the billboards and more.” This is the mantra Julie is using to create awareness of vitiligo.

In as much as people are curious, some questions come out as offensive to the vitiligo community.

“For example, someone would ask me what burnt me. These are not burns, my skin is normal, unlike a burn, which leaves the skin distorted.”

“I always tell people to not look at vitiligo as an illness or as if those with it need to be treated with pity. Just view it as art from an artist, God. We are natural pieces of art.”

Vitiligo can be treated. The treatment options are topical medications, light therapy, surgery and cosmetics. However, these options are expensive.

“I was on medication for 10 years, morning, lunchtime, and evening and it cost my mum over six million. At some point, I fought back and told her I didn’t want the medication anymore. They were not working for me. They were making it spread even more.”

Vitiligo is part of genetics. According to Julie, one of the most asked questions is whether her kids have vitiligo.

“As for me, I did not know who was carrying the gene. I recently discovered it when my mum started having white patches. Her condition started manifesting when she was in her 60s.

It is a 50-50 thing; your child can get it or not. As for me, three of my kids don’t have it. The other one had it, but now it has disappeared.”

The condition cannot be fully cured as it keeps reoccurring.

Her best advice for treating vitiligo is to work on one’s mental health.

“It is normally stress triggered. Anything that happens with your body, like having an accident, delivering a child as a lady, and many other situations, could trigger vitiligo.”

Since the skin lacks melanin, exposing it to the sun could have dire consequences. Those with these magical patterns should avoid the sun or protect their skin against it as much as they can.

There are different ways in which vitiligo manifests itself. Focal vitiligo focuses on one point, vulgaris which forms scattered patterns all over the body and segmental vitiligo affects only one side, left or right.

Acrofacial focuses on the hands and face and around body openings such as eyes, ears and nose.

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