WANGUI NJEE Demystifying vitiligo

When Elizabeth Wangui Njee, 26, first noted a white spot on her face, she was quick to brush it off but to her surprise, it didn’t go away.

“I was in form two then. I thought it was chalk dust but to my surprise it didn’t go away even after trying to wash it,” says Wangui.

This saw her seek permission from the school to go for treatment. She got cured and the patch disappeared. But another patch would appear on her back a few months later.

It grew bigger with each passing day and within no time it had formed a big spot. She saw a specialist doctor this time round who diagnosed her with vitiligo – a disease caused by a loss of pigment in the skin due to destruction of pigment-forming cells known as melanocytes.

Wangui notes that there is no medicine for the disease but it can be managed. By the time she was done with her secondary school education, her face was full of spots. And that is when myths started flying around especially from people who knew her.

“Some said there were some dowry payment my grandfather had not paid while others advised my parents to go pray facing Mt Kenya,” says Wangui.

She notes that some people who don’t know about the disease usually think that she got burnt while others see it as a bad omen. Wangui reveals that there are lots of myths being spread about the disease and this has seen people with vitiligo get discriminated.

“In some cases, I meet individuals who are afraid to shake my hands, let alone sit next to me. They suppose that vitiligo is infectious which is not the case,” she says.

And this discrimination is also experienced at the workplace where employers are reluctant to hire individuals living with vitiligo, something she knows better having experienced it while looking for work.

“After university, I tried searching for a job, but to no avail despite the fact that I was qualified. It took my brother’s intervention to get a job in one of the banks in the country,” explains the Bachelor of commerce graduate.

A bank is the hallmark of civilisation and one would think it is the last place one would be stigmatised for a skin condition such as vitiligo. But no, even here, stigma abound.

“My face was full of patches and it was really hard for me. I was working as a teller in the bank and clients would deliberately avoid my counter because of my condition,” she says.

Foray into politics…
Justifiably, Wangui was affected by the discrimination she faced and would thus close herself in the house and cry her heart out. Were it not for the support she got from her family, she would have succumbed to depression.

“My parents and relatives have been very supportive all through. They have given my life some sense,” she says.

It didn’t take long before she resigned from work and chose to stay at home instead. But it wouldn’t be long before she secured another job as a photojournalist for The National Alliance (TNA) party in Nyeri County.

“I enjoyed the job and people appreciated my work. I was also comfortable because no one seemed bothered by my condition,” she says.

In 2013, she was nominated as a Member of County Assembly in Nyeri to represent the youth. “I was not expecting it but when it came, I received it with both hands,” she says happily.

Wangui saw this as an opportunity to serve the youth of Nyeri as well as to spearhead the needs of people living with vitiligo. She managed to push for a motion in Nyeri County Assembly aimed at creating awareness about the disease.

“Currently, there are more people living with vitiligo than before. I cannot explain the phenomenon but may be people are coming out now, as they are not afraid. We need to create more awareness so that people can understand it and those living with it can lead normal lives.

The journey to acceptance is not easy. I want people to know about vitiligo and for those living with the condition to be provided with sunscreen and other basics like free eye check-ups,” she says, revealing that many people who have been diagnosed with the condition also suffer from depression with some opting to take their own lives.

Presently, the entire front of her body is white while the pigmentation on her back is slowly returning in patches. Wangui, a strong believer, has come to appreciate who she is and she says that her patches are her beauty. “I am beautiful. Don’t I look beautiful?” she playfully asks during the interview.

She notes that it takes self-love for people to appreciate you. “I quit a four-year relationship after because my then boyfriend knew I was insecure of my vitiligo and he thought if he left me I would never find someone else. He took advantage
of that. But the moment I started seeing myself as beautiful, I grew strong. Vitiligo is an art. If God hadn’t given me this, who else could he have given it to?” she wonders.

It is easy to notice the tattoos that adorn her fingers, back of her hands and arms. The tattoos are of her favourite scriptures.

“I realised that sometimes people who don’t understand vitiligo stare at me. I decided to give them something to read instead of staring at empty patches. This is another way of preaching the gospel,” she says tongue-in-cheek.

Demystifying vitiligo

Wangui is bent on creating awareness and demystifying vitiligo and has so far visited 16 counties and she is not about to stop soon. She plans to visit the remaining counties before the end of the year.

“I go round distributing sunscreen lotions to people with vitiligo who are vulnerable to sunburn and skin cancer because their white patches have no natural protection against the sun’s rays,” she points out.

The lotion is given for free by the Government of Kenya and it’s in all level five hospitals but most people are not aware.

“I am in talks with nominated MP Isaac Mwaura who represents special groups to have the lotion in the government health centres as most people suffering from vitiligo come from humble backgrounds. This will help them to access the lotion whenever they are in need of it,” she points out.

Wangui also visits schools to encourage students living with the condition as well as create awareness among students, revealing that children are more hard hit with vitiligo and the resultant ‘shame’ than adults. Part of her purpose is to make people living with vitiligo accept themselves and not to douse themselves in make-up in a bid to hide the spots.

All the same, she is aware of the challenges that persons living with vitiligo go through and urges them to find what they love to do and give their attention to it. She has a plan of starting a community-based organisation for people living with vitiligo so as that they can help each other in the journey.

“I had to go for counselling, as at the beginning it was not easy. Remember I first experienced it while in secondary school and you know this is the time girls are very sensitive about their looks and what people say about them.

But you can choose to ignore the disapproving glances by focussing on something you love to do. Above all, ask God for strength to pull through. At the end of the day, you are not limited by your skin but by your own inability to see the greatness and beauty within you,” she concludes.