Meet The Women On a Quest to Demystify Myths Around Vitiligo

Imagine waking up one morning and your entire hand is white, like mzungu white, and there are patches creeping up your arm, promising to increase the territory of colorlessness. Now imagine going through that completely alone, an anomaly in your community and the world at large. That would be such an isolating, challenging experience for anyone to endure, and for people living with vitiligo, this is only part of the challenge.

Vitiligo is a long-term condition where pale white patches develop on the skin. It’s caused by a lack of melanin, which is the pigment in the skin. It can affect any area of the skin, but it commonly occurs on the face, neck, hands, and in skin creases.

As the old adage goes, a problem shared is a problem halved. Community is one of the ways people with vitiligo are dealing with the condition.

Take Doreen Buchanan, an interior decorator who first saw tiny white patches on her skin in 2014 while she was in university, only for them to blossom into a full-on pattern very recently in 2022. “When my aunt first saw them, the first thing she concluded was that I had been bewitched,” she recalls. So, having them spread so rapidly later on must have been a jarring experience. “Especially when it got on my face? That was hard. I didn’t mind the patches on my hands, but my face is my passport. That’s when I tried to get medication for it. When we had tried everything—different doctors, herbal medicine, and some experimental medications—I came to terms with the fact that it wasn’t going anywhere,” she explains. “I also was not keen on wearing makeup to cover my face, as I knew it would make me feel worse about my skin. So, I went barefaced and got used to the new normal, which makes me a lot more secure.”

Michelle Neza, an accountant, has what she describes as a ‘resting bitch face,’ which helped deter many comments early on in her journey. But that didn’t mean comments didn’t come through despite that armor. She recalled an experience at work that caught her off guard: “Every year at our workplace we celebrate World AIDS Day and usually have counselors come around, along with people to test for the illness. It’s a habit of mine to always go and test whenever they come,” she explains. “This one time, a nurse was making small talk with me and noticed my vitiligo. She said, ‘It’s good you already got married, because it would be hard to find a husband after getting vitiligo.’” It was a moment where her guard was down and a person was emboldened to speak about her condition without considering her feelings. For that nurse’s information, Michelle got married with vitiligo already visible, and her husband loves every part of her!

Eva Atukunda, the chairperson of the Uganda Vitiligo Association, had a different experience. “My husband first approached my vitiligo with curiosity. Around the time we met, it was still a few small patches, which he was intent on understanding. He wanted to know if it affected me and what it meant. He would touch the patch, trying to understand it better—something people around me never did, because they were more scared than curious.” He has been one of her biggest support systems as an adult, as he would constantly affirm her beauty and protect her from people eager to comment on her skin. “He especially hates when people suggest solutions for me out of nowhere—he always steps in to end the conversation,” she shares.

For Cerinah Tugume, the CEO of Serene Beauty Salon, community was found from within the world of makeup, an industry she has carved a career in. Her vitiligo manifested earlier in her life, so she was used to it for the most part until she grew up and started hearing negative opinions. It was tough not knowing how to navigate that, and she learned how to do makeup not because she was ashamed of her face, but to introduce some normality into her life. Since then, she has perfected cover-up makeup for vitiligo, which involves high-contrast colors and lots of color-correcting procedures. This led to her getting into the makeup business, having formerly done Michelle’s makeup on her wedding. “This year is the first time I am celebrating World Vitiligo Day. I was always mildly disconnected from the vitiligo community for the longest time, but it’s only when Eva challenged me one day. She said people in the community look up to me, and that my journey was inspiring. That felt like a lot of responsibility,” she explains. “I do try to equip people with the ability to cover up if they want to, which I think is a small gesture of control I can hand them.” Cerinah actually taught Michelle the makeup routine she uses to this day, so she covers up whenever she wants to.

It’s funny how much impact a single figure of representation can have on someone struggling. To see someone in the same predicament you face, thriving, is like a nudge from God that you too are allowed to shine your own light and go for it—whatever ‘it’ is. For Doreen, that familiar face was Winnie Harlow. “I appreciate that despite whatever internal conflict she may have had, she decided to put herself out there. Just knowing I’m not the only one, but also seeing this person celebrated for it, empowered me to also share my journey.” The power of celebrated people cannot be understated when it comes to dissuading the stigma that comes with a visibly noticeable condition like vitiligo. Bullying is prevalent in schools and makes children feel alienated from their peers because they look different. Eva and the Uganda Vitiligo Association found a way to help students facing bullying in schools. “We go to the school of the child being bullied to do some educating. They bully because they don’t know, so we explain the condition to them and show them that these students are just like them. But whenever we go with media partners, and this child who was being bullied is highlighted, suddenly they are the school celebrity. We have found that this helps the situation way more effectively.”

There is a big privilege to having vitiligo demystified. Eva sees this in the different responses from the urban and rural communities of vitiligo warriors. While in town more people can be ignored or explained to, she finds that people living with the condition in more rural parts of Uganda suffer significantly more. “There is a superstition that if you see someone with vitiligo early in the morning, your day will be filled with bad luck. As such, many with vitiligo choose to leave their houses much later in the day than others.” She continues about their unique misfortunes, which surpass stigma. Sunburns are a problem people with vitiligo can face when exposed to the sun for long periods. Well, a farmer has no choice but to be exposed to the sun for long periods of time. “The access to sunscreen is very sparse, and yet sunburns can be painful once you get them. Their struggles can get super debilitating, so extra support is always given to their needs.”

Sunscreen is an important part of the skincare routine of anyone with vitiligo or lower levels of melanin in general. It protects the skin from getting sunburns and even more dire consequences of exposure, like skin cancer. When Doreen shared her now viral video about vitiligo, she got a very interesting form of support from viewers. “Some people who saw my video reached out and offered me some sunscreen. I have ended up with a lot more sunscreen in my house than I know what to do with. I’m at the point where I’m also giving them out to people who need them. The stuff’s not cheap, so it’s important to share what is available.”

Community is important for the little things like this—sharing whatever is on hand to make one person’s day a lot easier than the last, making sure they feel included, celebrated, and more than anything else, normal. It’s normal for your body to decide one day to stop making melanin in certain parts. It won’t kill you. But the lack of community can.

The spirit of community shone through most clearly in Cerinah’s endeavor to get everyone together to celebrate in this specific way, not just that, but hosting the entire photoshoot at her salon on Mawanda Road. The multi-day shoot featured conversations over breakfast and dinners. I was even tempted to pull out my phone and record some stories that were shared once the camera was off because they were so important in contextualizing the perspectives these four women have on the condition.

This vitiligo month taught me one thing: to find your people and support them. There is nothing new under the sun, but feeling like you are dealing with something alone is more debilitating than the condition itself. Sometimes all it takes is seeing someone like you handle their situation with grace for you to believe it isn’t actually the end of the world.

Credits:
Muses: @michneza @cerinahtugume @doreenbuchanan @atukundatibs
Photographer: @knoor_the_luo
Makeup: @serenebeautyug
Styling: @wayaclothing
Videography: @ochieng_photography
Assistant: @ritahnamirimu | @ritah_shot_it
Creative Direction: @atwiin3

SatisfashionUg@gmail.com