Vitiligo gave me a new face and a new sense of identity

While making a PR pitch on behalf of a certain company in Dar es Salaam, I felt more like something that the cat just brought in. One feels rather awkward before the panel company directors and senior managers when your face has patches of unpleasant discoloration on it – making you feel very self-conscious before other people.

The twenty minutes felt like an eon. I was glad when it was finally over.

While I gave the presentation the best of my shots, I can bet my last shilling that directors were staring at my mottled face with revulsion much more than they blankly stared at the PowerPoint presentation in front of them, or so I thought.

Although I am not given to being paranoid in front of people, this time around, I felt all sorts of butterflies in my belly – parts of my face have been eaten away by this terrible painless disease they call Vitiligo that is not really a disease and many people quietly suffer the shame of its ravages when it strikes.

Other times, while crossing from Kigamboni to Magogoni, people cannot help but gawp at my face that has been discolouring in patches over a period of time with ugly mottles like that of a leopard.

I know what courses through their minds whenever they look at me – some think that I had a motorbikes accident, others quietly think that I am a victim of muggers in a Manzese or Buguruni alleyways, while some imagine that it is a form of allergy. Some even quietly speculate worse diseases such as AIDS.

Although I am beginning to get used to the way I look, I cannot help but feel embarrassed whenever people gawk at me. I am learning to ignore people when they open-mouthed gawp at me.

Traumatic would be another good adjective to insert here because you well understand that the face is everything – many people have missed out on opportunities because of their disfigured faces. Also, the notion that I am a drunkard whose face has been grazed by the tarmac is not such an appealing one.

I’m not talking about an ailment you were born with and I’m not talking about an accident suffered after serious drink.

No! I’m talking about literally waking up one day and noticing that the skin on the body you’ve known for all your life is suddenly changing for the worst and there is nothing you can do about it. What I didn’t realize was how much it would change me. It starts as a speck that spreads.

It’s been many years since I first noticed a small, discoloured spot just slightly above my left eye on my forehead. It wasn’t particularly large, and wasn’t extremely discoloured either.

What is so irksome is that unlike other skin conditions, vitiligo mostly positions itself on the most conspicuous parts of the body such as the face, arms or legs – rarely the torso.

Back in the 90’s, a small patch occurred on my forehead. Of course I dismissed it as some fungus but got concerned when it started spreading. It was painless. When it wouldn’t go, I consulted a dermatologist who did all types of tests including test for syphilis.

One day, he said that he will not continue taking money from me since vitiligo was incurable then. He gave vague reasons including things to do with sunlight and ultraviolet (UV) rays along with other medical mumbo jumbo you expect to hear from a clinician.

Going to a dermatologist who confirms you have something called “vitiligo” which has no known direct cause, no cure and an unpredictable prognosis you are dismayed but since it does not hurt, the possible course of action is perhaps ignore it. Up until then, I knew nothing about vitiligo and the internet was unknown in this part of the world.

I had learnt to ignore it until early last year when more small spots started rapidly appearing on my cheeks and within a span of a couple of months, it was clear that vitiligo developed and was determined to eat away my face – I had every reason to get worried. I have since then tried all sorts of medications starting with the so called herbal with no tangible results.

On rummaging the internet for a solution, I come across Melanocyl cream and tablets containing the active ingredient Methoxsalen that is considered a skin colouring photosensitizer type of medication in a chemist shop. This particular medication from India is relatively unknown and probably not yet licensed to be used in Tanzania.

A drowning man grasps at anything, I reasoned. After all, did I have anything to lose by trying its use? I was told that it works by enhancing the skins sensitivity to receiving ultraviolet light (UVA) radiation.

The chemist told me that she stocked it because she has relative who suffered.

It is said to be effective in the treatment of psoriasis, the medication must be used alongside controlled ultraviolet light therapy. It can also be used to treat a variety of skin conditions such as vitiligo, cutaneous T-cell lymphoma and eczema.

You apply it, bask in the sun and it does magic, or so I was made to understand. This did not happen. Instead, my skin became red raw and irritating on applying the cream. And the tablets created an uncomfortable searing sensation in my stomach. The skin kept peeling off, something that was rather uncomfortable.

Lately, I have been consulting a Korean clinic in Kariakoo who convinced me through pictures of patients who have been cured before and after treatment. This is the third week of treatment and I can see slight improvements.

One Dr Yongsik Han who is a specialist in Keloid (growth of lumps on the ears and other parts of body) and vitiligo treatment who boasts of excellent result during arduous research on vitiligo for 28 years has set me on the course of treatment.

The first treatment method is applying the drug by mechanically rubbing the white spot area vitiligo drug. This can treat vitiligo of egg size at a time. You apply the drug which also has a searing smell, together with the pills and bask in the sun the pigment slowly return

This is a way to carry out 10 minutes of sunshine per day as a drug treatment not using before.

One sees significant effect after three months. The medication seems to work fine but one has to have a deep wallet. A month’s dosage exceeds Sh 100,000 comprising pills and some liquids

National Institute of Arthritis and Musculoskeletal and Skin defines Vitiligo as a disorder in which white patches of skin appear on different parts of the body.

This happens because the cells that make pigment (colour) in the skin are destroyed. These cells are called melanocytes. Vitiligo can also affect the mucous membranes (such as the tissue inside the mouth and nose) and the eye.