Demystifying and learning to live with vitiligo

Suspecting that their attention was on his face, which as he puts has on it patches of unpleasant discolouration, making him self-conscious before them. He could not wait for the twenty minutes of the meeting to end.

“I felt all sorts of unknown emotions as I gave the presentation because I felt like they were staring at my mottled face more than they blankly stared at the PowerPoint presentation,” he shares.

“Although I am not a person who gets paranoid in front of people, this time around, I felt butterflies flapping their wings in my stomach and it was a weird feeling. It was like I had a nail in my head and a stark reminder that parts of my face have been eaten away by this terrible painless disease they call Vitiligo,” he adds.

The stares are endless and he would notice folks stare at him on his way home on the ferry daily.

“I first noticed a small painless patch, slightly above my left eye. It was neither particularly large nor was it extremely discoloured. I dismissed it as some fungus but I became concerned when it started spreading. I assumed it would disappear after a while and when it did not, I decided to consult a dermatologist who did all types of tests, including syphilis,” Peter narrates.

The doctor later informed him that he had vitiligo and that it was an incurable skin condition. This was bad news to him.

“The doctor told me that it had no direct cause and no cure. However, since it does not hurt, he advised me to ignore it. Before he told me about it, I knew nothing about it and since it was in the 1990’s, there was no internet for me to look it up,” he unveils.

He followed the doctor’s advice and ignored the condition until 2015 when more patches began to discolour his face.

“More small spots started to rapidly appear on my cheeks and within a span of a couple of months, it was clear that Vitiligo was determined to eat away my face. This time, I became worried and started to seek medication,” he explains.

The first medication that Peter went for were herbs. Against his hope, they did not work or even show signs of reducing. He then went for a cream and tablets called Methoxsalen which he came across on the internet while he was searching for Vitiligo.

“According to Dr Google, these two medications contain an active ingredient called methoxsalen that brings colour to the skin. This particular medication from India was relatively unknown and was at the time, not approved for use in Tanzania. I was a drowning man desperately in need of getting rid of the patches on my body and this felt like an opportunity for me to get my skin back. But little did I know that it would be futile,” he details.

Peter connected himself with a chemist who told him that the two medications enhance the skin’s sensitivity to receiving ultraviolet light (UVA) radiation. She further informed him that she was stocking the medication because she also had a relative who was using it.

“I was told to apply it, bask in the sun and voila! However, that did not happen as I was told it would. Instead, my skin became red and irritated after I applied the cream. The tablets also created an uncomfortable feeling in my stomach. My skin started to peel off on the parts I had applied the cream. I decided to call it quits,” he says.

In 2016, Peter began visiting a Korean clinic that was situated in Kariakoo where he was convinced by the ‘before and after treatments’ pictures that showed improvement of the patients’ skins.

“I got on medication whose procedure was also to apply the cream on the patches and bask in the sun for 10 minutes to enhance its work on my skin. I began to notice slight improvement after three months. The medication was working however it was expensive. A monthly dosage that includes pills and some liquids exceeds Sh100,000,” he details.

His case differs from Mike Deo’s, a fashion model and photographer based in Dar es Salaam who got Vitiligo at an early age.

“When I was a standard seven student, it was the first time I noticed a patch below my eye. When I joined form one, the patch began to grow in size, slowly spreading on my skin. In 2017, the size of the patches had grown even bigger and were spread out in different parts of my body,” Mike says.

He became curious in the beginning, but as he grew, he left like he was growing with it.

“When I accepted that these spots were part of me, it became a lot easier for me to explain to other people. People would ask ‘what are those?’ when the patches were small, however with time, they would not question the sizes of my patches because they were already used to the condition that I am in,” he explains.

A short while before making a debut in the modeling world in March 2016, Mike met a US-based doctor who influenced him to get tested to find treatment for the patches.

“Not many people understood Vitiligo at the time and the medication did not work. One day, as I was scrolling through Facebook, I saw faces of people with patches on their skin and it made me feel warm; that I was not experiencing this alone,” he says.

For the first time, Mike did a deep dive on Google and found faces of people across the world who embraced the patches of vitiligo on their skins.

His self-acceptance has seen Mike grace different runways when he chose modeling in 2016.

Unfolding the mystery behind this disease, Dr Andrew Foi, a Dermatologist at Muhimbili National Hospital, explains that Vitiligo happens to a person who is first born with normal skin.

“It affects people of all skin tones and happens at any moment in their lives,” Dr Foi says.

He details that the cause of Vitiligo is yet to be discovered, however, it is related to an autoimmune disease whereas immune cells that are supposed to prevent or limit infection to a human body, attack each other for no apparent reason and this causes them to attack special skin cells called melanocytes that give colour to the skin.

Dr Foi explains that when melanocytes get attacked, they fail to produce a pigment called melanin and this leads to a person losing colour.

“This disease is a little complicated in because the skin colour can get back, even without medications or after treatment. In this second case, the treatment must begin in the early stages, before it spreads,” he details.

According to Dr Foi, there are three types of Vitiligo which are:

Segmental - where one side of your body or area is affected.

Generalised - where the patches appear indiscriminately on various parts of a person’s body.

Mucosal - which happens in the mouth and in the genital area.

“A lot of people ignore the early signs of Vitiligo and only get alarmed when the situation has gotten almost out of hand. This is because it is a painless condition that does not have any discomforts aside from the fact it changes how someone’s skin looks, he explains.

Dr Foi unveils that there are patients who even go through depression and bouts of low self-esteem once they get vitiligo.

“Vitiligo affects the quality of life because it changes someone’s outlook completely. For some patients, it takes a while to accept this change,” he says.

He recalls a case of miners in North Mara who were affected by Vitiligo and it was believed that it was a skin condition caused by the poisonous liquid they were using to clean gold. A team of doctors from the Muhimbili National Hospital researched on the it and concluded that it was Vitiligo.

“Most Tanzanian societies are still unaware of this disease and those that are affected choose to lead quiet lives. The majority start feeling lonely and lose their confidence. It is advised that one be checked as soon as they notice any spots on them,” he suggests.

He mentions that there are several treatment options including tablets, and vitamin supplements that boost melanin production.

“There are creams that can be applied on the affected skin as well as laser treatment through which a narrow beam of Ultraviolet B (UVB light) is focused on the affected areas on the skin to restore the colour. The service is available at Muhimbili Mloganzila Hospital,” he says.