One skin, different shades how Vitiligo has coloured our lives

Models Tom Radido and Julie Nasuju. PHOTO| COURTESY

What you need to know:

  • In high school, I knew that my Vitiligo would give the bullies an added incentive to pick on me so I lied that the condition was contagious.
  • People usually try to rationalise my appearance by asking whether I was burnt by hot water or whether I tried to bleach my skin and the experience went horribly wrong.
  • We are currently looking for donors to help us set up a digital system that will help us reach out to more Kenyans living with the condition.

Julie Nasuju, 29, DJ and Model

I am a proud mother of four children aged years ten, nine, six and four months. My third born has already shown signs of Vitiligo on her skin. Vitiligo has coloured nearly all facets of my life, from my relationships, parenthood, career and even marriages.

While coming for this interview, a lady who was about to sit next to me in the matatu left the vehicle as soon as she noticed my face. I was not surprised because most of the times when boarding a matatu, the seat next to mine will be the last to get a passenger.

Earlier in the morning, I went to fetch water in my neighbourhood and residents, visibly disgusted, pointed fingers at me. It is an experience that I go through daily; I have made a habit of laughing it off.

Suffering from Vitiligo has caused me to grow a thick skin. Over the years, I have been given many nicknames such as Jersey (after the patterned breed Jersey cow), Jeshi (after the camouflage clothing worn by army troops), Maua (flower) and Mzungu Nusu (half-European).

People usually try to rationalise my appearance by asking whether I was burnt by hot water or whether I tried to bleach my skin and the experience went horribly wrong.

I am told that I developed the first symptoms of vitiligo at eighteen months of age. My mother did not understand the condition and fired about five nannies after she mistakenly accused them of torturing me. She thought that the patches appearing on my skin were as a result of the nannies burning me.

DEPRESSION

After it became apparent that the nannies were not at fault, my mother started making hospital rounds. It took visits to five hospitals for my condition to be correctly diagnosed.

The medication prescribed however exacerbated the illness, and the discolouration spread from my face and torso to my eyes, ears, fingers, and joints. I have not been on any medication since I was a child.

I was bullied daily in primary school. At home, my mother, who had to raise me on her own, had not come full circle to the fact that my condition may be permanent.

She raised me in a very strict manner in an attempt to ‘toughen me up’. When I was about eight or nine, I felt unwelcome both at home and in school. I constantly went through what I now understand to be depression.

I ran from home thrice and attempted suicide severally. I recall one instance when I jumped in the middle of Waiyaki Way so that a truck that was speeding along the road could crush me. I would have died that day had a petrol station attendant not pulled me aside by a whisker.

I became very violent and aggressive at 13 when I couldn’t stand the bullying anymore. I fought off most of my bullies, boys included, and this earned me a respect that protected me throughout the rest of my primary school.

ESCAPE FROM BULLYING

At the time I was joining high school, a severe form of bullying, where it was customary for form ones to be hazed during their entire first year of high school, was rampant across Kenya.

I knew that my Vitiligo would give the bullies an added incentive to pick on me, so I lied that the condition was contagious. I had a bullying-free form one though my schoolmates quickly found out that the disease was not contagious.

I was an avid handball player where I played as the goalkeeper for my school up to the national level.

At 18, after high school, I ran into the arms of the man who first said that he loved me. My self-esteem was already low as I did not believe anyone could truly fall in love with me and my disease.

It was only after I got pregnant and the man fled that I discovered his love was not genuine. I made a similar mistake less than six months after giving birth to my firstborn, and the second man I trusted with my heart also fled when I was just five months pregnant.

Julie Nasuju,29, developed the first symptoms of vitiligo at eighteen months of age. PHOTO| COURTESY

To sustain myself and my two children then, I took a job to peel potatoes at a local bar and later graduated to a barmaid. I had never felt more at home than when I worked at that bar.

You see, I was used to being judged on my appearances at every moment, but I soon discovered that drunkards are way friendlier because they do not judge you based on your looks. It was better than dealing with sober people.

ABUSIVE MARRIAGE

It was while working at this bar that I took a liking to the resident DJ. He taught me how the craft of disc jockeying and we fell in love, and he would soon become the father of my third child.

We were about to tie the knot, but his family stepped in and insisted that he couldn’t marry a ‘broken’ woman like me.

“What if your baby turns out to be like her?” They pestered. This, coupled with the fact that I was becoming a more popular DJ than him, caused my husband to be turn into an abuser.

Even after the birth of our child, he would beat me almost to a pulp every day, constantly telling me that I am useless and no one could ever love a woman in my situation.

I reported the abuse to the police thrice, but he was never arrested. I held on to the relationship for four years amid his adultery and battering because I couldn’t stand the thought of another failed relationship. Eventually, however, I gathered the courage to distance myself from him.

LOWEST POINT

But perhaps the lowest point of my life was when I reunited with my biological father five years ago.

He was a prominent politician, and I was looking forward to bonding with him and making up for all the time we had lived apart during my childhood after he had initially abandoned me.

However, I was gutted when he told me to my face that I was worthless and I shouldn’t go about telling people that he was my father.

I have taken it upon myself to prove him wrong and show the world that Vitiligans have a value that goes beyond their skin.

Apart from my deejaying, I am now a runway model and I have featured in several music videos, including an upcoming project with Sauti Sol.

I am also the acting chairperson for the Vitiligo Society of Kenya, an organisation that currently has 4,000 registered members.

Funding the organisation has been a big challenge. We are currently looking for donors to help us set up a digital system that will help us reach out to more Kenyans living with the condition.

***

Tom Radido, 29,

Banker and Model

It would not be an understatement to say that the world was under my feet when I was 19.

At the nascent stages of my adulthood, I had just completed secondary school and was looking forward to joining the university the following year in 2009. Little did I know that my optimism for life was about to be crashed, and my hopes for the future would be dampened that year.

I first noticed a brown lump on my face when I was working on the farm with my mother. She asked me to ignore it but I got increasingly worried when the brown patch got worse.

I sought medical attention from a doctor who concluded that what I had was no more than an allergy and prescribed to me a hydrocortisone cream.

However, the more I applied the cream on my face, the faster the brown patches seemed to spread. In just a month, almost half of my face had been discoloured.

Panic set in as my family took me to more than seven hospitals in just four months, but none of the doctors that we saw seemed to know exactly what ailed me.

VARIOUS PRESCRIPTIONS

Every doctor prescribed their own set of medication, each with its own side effects. I remember I was prescribed for a dosage whose side effects were so severe that I had to take them while on bed because as soon as its effects kicked in, my nervous system would shut down and I would not even be able to lift a finger.

While none of these medicines worked, I continued to take them day in day out because I desperately wanted to become ‘normal’ again. I wanted to get healed.

Whenever I saw no noticeable changes on my face after taking a medicine for about a week, I discontinued it and tried another dosage.

Meanwhile, I was losing friends left, right and centre. The people I grew up and schooled with suddenly became strangers, some of whom disowned me to my face. They were afraid, and understandably so, that my strange condition may have been contagious.

Relatives too wouldn’t touch me with a ten-foot pole. They whispered, not so discreetly, that I had been cursed and they wouldn’t let their children (my cousins, nephews and nieces) near me. I am forever grateful to my immediate family who stood by me.

LOW SELF-ESTEEM

Naturally, I got very depressed and retreated into my own shell. I shunned people and became a recluse; hiding in my room for most hours of the day.

My self-esteem had taken a hit that I was sure it would never recover. “Why me?” I constantly asked God.

A friend stated that they’d rather I had suffered from HIV/AIDS than whatever condition that was turning me into a hideous monster.

At a point, I even thought that I had a rare form of cancer and prepared myself to die in a few weeks.

After about a year and half of agony, someone suggested that I see a skin care specialist at the Aga Khan hospital. It was there that my condition was diagnosed as Vitiligo.

Tom Radido,29, was diagnosed with segmental vitiligo. PHOTO| COURTESY

I was made to understand that my own immune system was attacking my melanocytes, which are skin pigment cells that are responsible for producing melanin. More specifically, since the brown patches only developed on the left side of my body, I was suffering from segmental vitiligo.

The most painful realisation was finding out that there was no substantive cure for Vitiligo, and that I would most likely have to contend with the disease for the rest of my life.

I am glad that the doctor who attended to me also counselled me at length and that marked the beginning of accepting the new me.

Though I took medication briefly after my diagnosis, I soon gave up on it because of the side effects. Over the years I have noticed that living a stress-free life does more to contain my skin discolouration than medication ever could.

I recall an experience at the cafeteria during my first week at Moi University when a schoolmate, upon catching a glance of my face, got so scared that she ran away.

NOT CONTAGIOUS

We crossed paths again one week later, and this time I made sure that I approached her. I educated her about Vitiligo, putting emphasis on the fact that the disease was not contagious.

This experience in itself is proof that the going was not all that smooth while I was studying for my undergraduate degree in Physics.

After graduation, I encountered a job market that judges people by the way they look rather than by their skills and qualifications.

I knew the decks were already stuck against me, so I put thrice the work in my job-hunting efforts. I attended many interviews but in most of them, the interviewers told me outright that I did not project the right ‘image’ for their companies.

Some even refused to sit down with me in the interview room and when they did, they would barely look me in the eye.

I am lucky that the bank at which I currently work decided to take a chance on me. Today, I am comfortable in my skin and I am actually a model.

I am a member of Royal Patches, a platform under the Vitiligo Society of Kenya that organises meetups and empowering sessions for Kenyans living with Vitiligo.

In June, a friend of ours, a 20-year-old girl suffering from vitiligo, committed suicide. This proves that there is a need to reach out and counsel fellow Vitiligans.