An estimated one percent of the global population lives with vitiligo, a condition that causes the skin to lose pigment. But in Uganda, it is more than a medical diagnosis. It is a condition wrapped in myth, often mistaken for a curse, a spiritual punishment, or something contagious. And for those who live with it, the emotional weight can be just as visible as the changes on their skin.
What I learnt writing this story goes far beyond statistics. Speaking with several Ugandans living with vitiligo, each one honest, grounded, and remarkably resilient, I have heard stories of misdiagnoses, bullying, isolation, and fear. But I also witnessed power. The quiet power of choosing visibility.
The loud power of refusing shame. Each of these people opened up with striking vulnerability, sharing what it means to live visibly in a society that often wants to look away, writes Gloria Haguma.
Vitiligo taught me about beauty, pain, and purpose
Cerinah Tugume
I was 10 when I first noticed the white patches. At that age, you are not thinking about skin conditions; you are just being a child. But over time, vitiligo changed how the world saw me, and eventually, how I saw myself.
My mother took me straight to a dermatologist, the late Dr Nsibambi, who explained what was happening to my skin. I started treatment early, with vitamin tablets and creams, but the condition continued to spread. From my eyes, to my lips, eventually my nose and my hands. That was the beginning of a lifelong journey.
Growing up, it was not the vitiligo itself that hurt the most; it was people. Strangers shouting on the street, children pointing, adults offering unsolicited “cures,” and the painful superstition that surrounded it. In Uganda, many people still think vitiligo is ‘abalongo bakwokya’ (burnt by twins).
That kind of ignorance cuts deeper than the condition ever could and can wear one down. At 16, I started wearing make-up; not to hide, but to cope. It gave me peace in public spaces and helped me avoid invasive questions. Over time, I mastered the art and eventually built a career out of it.
What began as a coping mechanism became a passion and a business. But healing did not just come from make-up. It came from God. My faith answered questions no doctor or friend could. It grounded me and reminded me that I am more than my skin.
I also had an incredible support system - family and friends who protected me, stood up for me, and let me be soft when the world was hard. Today, more than 30 years since my diagnosis, I no longer seek a cure. I have a phototherapy machine at home. I use it sometimes, but not out of desperation.
I no longer feel desperate for the vitiligo to go. If anything, I now use my experience to support others. I meet people, some too afraid to leave the house, whose pain reminds me of where I once was. That is why I created a video series on my Instagram called “Calls to Cerinah”, where I “call” my younger self and tell her what she needed to hear, what I wish someone had told me. That she is going to be okay. That vitiligo is not the end.
That there is beauty ahead. When I speak to newly-diagnosed individuals, I encourage them to seek proper treatment early and to find emotional support. Vitiligo is different for everyone; some heal, others stabilise, and some continue to see changes, but healing emotionally is just as important as anything medical.
In my work, I now help women see the best version of themselves. I accentuate beauty, yes, but I also try to remind them that true confidence starts within. Character, self-worth, purpose; those are the things that last beyond any mirror or camera lens. I hope that society shifts.
That families of those with vitiligo educate themselves, that the Ministry of Health invests more in support structures, and that we finally treat skin conditions with the seriousness they deserve, because psychological scars are real. Until then, I will continue to do my part.
Every June, I commit to an awareness campaign, whether big or small. I do it for the girl I was, and for every person just beginning this journey. Vitiligo may have changed my skin, but it never took away who I am. If anything, it brought me closer.
I have not been home since 2023
Leah Nawire
My name is Leah Nawire. I am a teacher at St. Leo’s College Kyegobe in Fort Portal, and I have lived with vitiligo for just over a year now. It all started in July 2023 when my two-year-old son pointed at a small patch on my chest and asked, “Mama, what is this?” That is when I looked in the mirror and saw it for the first time. At first, I did not think much of it. But over the next weeks, the patches began to spread; to my arms and neck. I had never even heard of vitiligo before.
I was eventually diagnosed after seeing a series of doctors. It was confusing and scary at first, especially with the myths and superstitions people believe. Some said I had been bewitched, others said I was being punished for ancestral mistakes. I cried a lot in the beginning. Once at a salon, people were scared to touch me or use the towels that had been used on me.
I will never forget that feeling. But I have also found strength. I met a woman who has lived with vitiligo for 18 years, and she was confident and thriving. I joined the Vitiligo Association of Uganda and found a community. With my job as a teacher, my students have been nothing but kind.
Some even brought me local herbs, thinking they would help. And my children, they still call me “beautiful mom”, and that means everything to me. The hardest part, though, is that I have not seen my mother since 2023. I am originally from Mbale, and when my sister showed her a photo of me, it broke her heart. She has pressure and diabetes, and I am scared what seeing me in person might do to her.
She still calls me and says, “I dreamed about you, have you changed?” I just do not know how to face her yet. Treatment has been expensive. I have spent more than Shs2m, and now I have had to stop. The medication helped slow the spread, but without it, new patches appear every few weeks.
But with the everyday expenses such as school fees, I have had to put my medication aside and put my children first. Despite everything, I still stand. I still teach, and live my life the best way I can. I want people to know that vitiligo does not make me less. We are not cursed. We are human. And what we need is understanding, access to affordable treatment, and to be seen for who we are, not just how we look.
I used to cover my face, now I work to be seen Eva Atukunda
I was born in Rukungiri, studied in Bushenyi, and moved to Kampala for university. That is where I first felt the sting of stigma. One day in a taxi, people started loudly spreading bizarre myths about me, saying my family had sacrificed twins and that my vitiligo was a curse. I was horrified, and from that moment, I began wearing make-up just to hide.
Eventually, I joined the Vitiligo Association of Uganda; first as a volunteer, then as a programmes officer, and now as executive director. It was not the title that pulled me in; it was the people. I met others living confidently with vitiligo, and their strength helped me shed my own shame. Today, I wear make-up only when I want to.
The Vitiligo Association of Uganda was founded in 2015 to raise awareness and provide psychosocial support. We have expanded our work to include medical referrals, treatment access, and advocacy, pushing for recognition of vitiligo in national disability and health structures.
Living with vitiligo in Uganda comes with real emotional, social, and economic challenges. Misinformation is everywhere. Some think it is HIV, leprosy, or a punishment from God. Others believe in twin sacrifice myths.
These beliefs isolate people, cost them jobs, and leave many too ashamed to leave their homes. I have seen people misdiagnosed and given treatments for conditions they do not have. Sunscreen and proper medication are expensive; many cannot afford the basics.
That is why we partner with groups such as Glenmark Pharmaceuticals and the Albinism Umbrella to distribute supplies and offer referrals to clinics such as the Kampala Dermatology Centre. We also run a WhatsApp support group with more than 100 members, because connection matters.
Some of the most meaningful work we do happens quietly. We visit people in their homes. We sit with them, share our own stories, and help them feel less alone.
One girl’s story has stayed with me; her family was evicted from their village when she developed vitiligo.
She ended up hiding in a bush until we found her. Today, she is back in school and thriving; proof that change is possible when communities are educated. People with vitiligo deserve the freedom to live without shame.
Whether someone chooses to wear make-up or not, that decision should come from a place of confidence, not fear. We do not tell people how to cope; we walk with them as they find their own way. If I can do one thing in this role, it is to push for mass awareness, through schools, media, and policy.
We need government support and national data. But more than anything, we need to keep telling people with vitiligo: you are enough. Beauty starts inside. Believe it. And find people who remind you of that truth, especially on the days you forget.
I was told I had HIV
Isaac Mota
I first noticed a white patch on my lip when I was still in school. I did not think much of it until it started spreading, and instead of asking questions, people assumed the worst.
Some classmates said I had HIV. I was so affected by the rumours that I asked my mom to take me for an HIV test, just to prove them wrong. Even at home, it was not easy.
Some relatives avoided me, thinking vitiligo was contagious. I will never forget my cousin refusing to touch a cup I had used. But my mom and sisters stood by me. They gave me the strength to keep going. The discrimination in Uganda is real. People stare, whisper, or ask ignorant questions. Dating is also tough. Some women think they will “catch” it.
But I have always been bold. If I like someone, I let them know. If she says no, that is life. Modelling, however, changed everything for me. I was working at an event when a lady named Michelle Omamteker from Malengo Foundation saw me and said, “You would be a great model because of your skin.”
Since then, I have walked runways, worked with designers, and embraced the very thing people once mocked. And when I am on the runway, I feel celebrated and seen. But I have also been turned away from job opportunities outside modelling, just because of how I look. That hurts. Still, the support I get from the creative industry has been incredible. Some comments sting, especially online.
Once, someone left a comment on one of my posts saying my vitiligo was punishment for abandoning my twins. The crazy part? I do not even have children. But I also meet people who have found courage in seeing me live openly. I once met a girl who used to hide under make-up.
After speaking to her, she felt encouraged and stopped wearing the make-up. That meant a lot. Right now, I work with Malengo and other groups to support people with vitiligo across Uganda. We meet, share stories, give out sunscreen, and encourage each other.
I get messages every day from people, especially parents, looking for hope. If I could speak to my younger self, I would say: “Do not let the world break you. Vitiligo is not the end of your story. It is just one part of it”.
