PEOPLE Balinda Musti’s Triumph Over Vitiligo

BALINDA MUSTI’S

TRIUMPH OVER VITILIGO

THICK SKIN NEVER COMES EASY, BUT I BUILT IT. I CHOSE TO SURROUND MYSELF WITH POSITIVE PEOPLE AND IGNORE NEGATIVE COMMENTS

In some primitive cultures, people consider vitiligo a curse and regard people with it as bad omens. Sorcerers are consulted, and sacrifices are made. In Uganda, some ignorant people believe that those with the condition were scorched by twins, because it is believed twins have supernatural powers and can punish one if offended. These myths can be extremely upsetting and isolating for sufferers of the disease.

What do you do when the body’s largest organ undergoes a series of uncontrollable changes? For 26-year-old Mustafa Ibrahim Balinda, also known as Balinda Musti, it has been a long, tedious journey of self-acceptance.

Balinda, a talented photographer and content creator, has Vitiligo, a skin disorder caused by the lack of melanin, which is the pigment in the skin. It presents with white areas (called macules or patches) that appear on the skin when pigment cells fail or die. The patches don’t hurt and are non-contagious.

Famously, the late superstar, Michael Jackson, was misunderstood worldwide when he chose to treat his Vitiligo by opting to remove all the melanin from his body in the 80s. For years, he was judged, accused of skin bleaching and racial identity issues, and went through a terrible time. His autopsy confirmed the condition.

According to studies, it’s unclear exactly what causes these cells to die, but it may be related to a disorder of the immune system, family history or a trigger event. The drawback, which Balinda has had a generous share of, is the stigma around it.

“We don’t know how to treat people that are different,” he says.

People with Vitiligo often feel embarrassed or anxious about their skin owing to the stares, unkind comments and superstitious thinking around the disorder. This leads to low self-esteem and depression. Globally, about 1% or so of the population has Vitiligo.

Four years ago, Balinda chose to turn his life around and decided to celebrate his uniqueness and beauty – and his life has never been the same.

Below, he shares his journey to self-acceptance, one he still considers a ‘work in progress’.

CHILDHOOD

My dream, as a child, was to be a renowned footballer and swimmer, but things changed at the age of six. I developed a white patch in my armpit and got concerned, alerting my parents. They asked if there was pain or itching around it. There was none, and they asked me to not take it seriously.

Over time, the patch got bigger, spreading way beyond the armpit. Again, I got concerned and let my parents know. This time, they made an arrangement for me to see a specialist. After some tests, the results showed that my skin cells were weak and failing to produce colour. The specialist went on to explain that the skin

disorder was called ‘Vitiligo’. He counselled me and told me to prepare to see even more patches. At that age, I couldn’t comprehend many of these things.

I was immediately put on bi-monthly treatment, but sadly, it was too pricey for my parents. The doctor’s consultation fee alone was 50,000 UGX per visit. And that wasn’t all – as much as I took my medication as prescribed, the patches kept spreading like wildfire. As a child, this was even more disturbing to watch. I got up one day and discontinued the medication.

SCHOOL

At first, because I was always clothed in a shirt, no one at school noticed. A few, who were close to me, would take notice of little patches on my neck and ask if I was okay. My answer was always that it was a disease that I was healing from.

At 13, I couldn’t hide the patches under my shirt anymore. They had spread all over my neck and hands, and I was thrown into a long state of anguish. I wondered why this was happening to me and why I was not looking like the other ‘normal’ kids. I became a recluse, avoiding friends and gatherings after school. Over the weekends and holidays, I stayed indoors during the day, stepped out at night, and wore jumpers, gloves and socks all the time.

Over time, my pain and anguish turned to anger. I couldn’t afford to watch my peers live normally as I drowned in anxiety, so in Senior 2, I dropped out of high school. My parents had a hard time accepting my decision, but knew how depressed I was; they had been as pained as I during the whole experience. They urged me to fight on and complete O’ Level, but I couldn’t imagine two more painful years at school; my mind was made up – I was done.

I am grateful that a few people in my circle understood what I was going through. They kept me sane. The rest were, for lack of a better word, nasty. People feared that I would spread ‘my disease’ to them or their children if, for example, I shared clothes or got close to them. Did I know if it was contagious? No, I didn’t. Those days, I couldn’t muster the strength to learn more about Vitiligo. I was depressed and angry.

FIGHTING BACK

I always thought that my ailment was temporary and that a time would come when I would be ‘normal’ again. Because of that, I jumped at every idea or advice about finding a cure. I even approached a witch doctor out of desperation. He told me to offer eggs of a local chicken to the gods, and asked me to give him a clock! When his concoctions didn’t work, I tried my luck with others. But the patches never left my skin.

I kept hoping for a miracle cure. Walking into witch shrines is scary, they were dark and eerie, but I braved it. They kept asking for more money to appease the gods until it became exhausting. In the end, I was crushed that it didn’t work. But I didn’t relent. I resorted to herbal concoctions, which made me sick; I lost my appetite and vomited uncontrollably. That was when I decided to stop fighting. I wanted my brown skin back, but I wasn’t ready to lose my life while at it.

ACCEPTANCE

In 2019, Mufti Menk was invited to Uganda for a lecture at Namboole stadium and because there was no entry fee, my cousin convinced me to join him. I still don’t know how I gathered the courage to attend a public event, but I went. We were lucky to get front seats where we could see him clearly. His words moved me. It was a very powerful lecture and I felt like he was speaking directly to me throughout. I remember mumbling to myself, “I think now is the right time to accept who I am. I am different and it’s fine. I’m done suffering.” And that was it!

MUFTI MENK’S MESSAGE

Mufti Menk asked us to look at ourselves in the mirror. “If you can raise your hand, that means you can get yourself out of whatever challenge you are going through,” he said. I pictured all the homeless children I had seen on my way to Namboole and realised that I had been so unfair to myself.

At home, I ran to the mirror and broke down, sobbing uncontrollably. I had lost years of my life hiding and being angry, yet I had so much to be grateful for. I had lost friends and sunk myself into depression. I decided this was me, and whatever people said, I had to just trust in myself. I had one life to live.

It wasn’t easy at first, people stared everywhere and I often went back home depressed. Thick skin never comes easy, but I built it. I chose to surround myself with positive people and ignore negative comments.

BRAVING IT ON SOCIAL MEDIA

Around that time, I discovered TikTok and explored it. On the platform, I found happy people, comfortable in their skins and doing what they loved to do – dancing, singing, acting, etc. I decided to be bold and venture out, creating all my TikToks shirtless, and was overwhelmed by the support and positive reactions. This encouraged me to keep going.

Currently, I post a new TikTok every other day. The silver lining is that I get to celebrate myself and also create awareness about Vitiligo. I have more than 88,000 followers on the app, who constantly flood my inbox with positive comments and words of encouragement.

DATING

My first girlfriend once asked me to explain why I had a white patch on my chest. My answer was that it was a minor condition that would heal. I was worried she would leave me. She didn’t buy my explanation and rationalised it as a birthmark. We later broke up. I had other girlfriends along the way, some of whom were supportive. Others were ridiculed and became overly conscious about dating someone like me. Now, I find it easy walking up to girls, which used to be so nerve-wracking for me in the past.

ACTIVISM

Thanks to TikTok, the celebrated fashion photographer and designer Banji Bagwana once sent me an invitation to shoot pictures for Louis Magazine, a French publication. After a while, he put me in touch with Martin Senkubuge, a model and activist for Vitiligo. With help from the nonprofit Goethe-Zentrum Kampala (Uganda German Cultural Society), Senkubuge put together a Vitiligo awareness exhibition at Makerere University. That day, I met other young people with skin disorders. It was surreal just seeing myself in them and their stories.

We planned to come together for another exhibition to support and encourage people like us, and to sensitise Ugandans about the truths and myths around Vitiligo. Sadly, this didn’t come to fruition because shortly after, the country was put under a lockdown due to Covid19. We are planning to make it happen very soon. Away from that, I’m using every opportunity to enlighten the masses that Vitiligo is not witchcraft, it’s not contagious, and we need to support and love everyone who has it.

PHOTOGRAPHY

A friend introduced me to photography. I wasn’t interested at first, but he believed I had the creative edge to do it. With his support, I practised, and have since taken some great shots. At the moment, I don’t have my own equipment due to the high cost, so I hire it whenever I need to. It’s an interesting journey though.

CHALLENGES

When I stand in the sun for too long, my skin gets sunburnt. It becomes itchy and can take up to two days to get back to normalcy. Also, I am always looked at differently. I cannot walk past a group of people and not hear a whisper or comment. Many people are still ignorant about Vitiligo, they believe it’s contagious. That makes hanging out in public challenging for me.

THE FUTURE

I would like to continue empowering myself and others who have Vitiligo. I have met so many people that have supported me and given me invaluable life advice. I would like for a time to come when no one has to go through what I went through, when they can access all the knowledge and support I have now as early in their life as possible.

I would also love to grow Balinda Musti into a personal brand. I believe that would afford me more opportunities to support the cause. I would also like to do a bit of modelling; it’s unbelievable how some people admire my skin these days. I also look forward to improving my photography craft.

Balinda leads the Vitiligo Association of Uganda, which includes 1,000 members living with the condition. His pictures can be found @Balinda Photography on Instagram.

TREATMENT

While Vitiligo is incurable and difficult to manage, several therapies have been developed to help people with this condition. These therapies include but are not limited to topical drugs, immunosuppressants, phototherapy, lasers, and several surgical processes. It is advisable to use sunscreen when outdoors.

According to Dr Ronald Katureebe, a Dermatologist at Kampala Dermatology Clinic, Vitiligo can be managed especially if detected early. Areas that involve the face, trunk and arms tend to respond better to treatment than the lips, palms and feet, which are more resistant. And when one has had Vitiligo for a long time, it gets harder to treat and manage.

“Alternatively, one can opt for methods that result in complete removal of pigment to make the skin uniform. It’s important to note that psychosocial support is a critical part of treatment for Vitiligo given that the condition comes with a lot of stigma for victims,” Dr Katureebe says.

“Vitiligo is in no way linked to being ‘ burnt by twins’ as some wild tales in some Ugandan cultures have always asserted. It is also not linked to any other serious skin disease besides being a defect of skin pigmentation. It is not infectious and unaffected parts of the skin remain very normal and healthy,” he concludes.