Elizabeth Wangui, advocate for people with vitiligo, albinism

A small mark under her left eye marked the beginning of a struggle that would deny Elizabeth Wangui the chance to enjoy her youth, get employment, serve people and even shake hands.

She became the subject of ridicule at home, in school and everywhere she appeared and she thus decided to be an introvert.

That white patch on Wangui’s face which signalled the beginning of her struggle with self-esteem, appeared when she was in Form Two at Pangani Girls High School in 2004.

“We had just finished taking lunch and were heading to the classrooms. A friend asked me to wipe off a white “substance” from my face. I tried, but it was stubborn,” she says.

APPEARANCE CHANGED

What Wangui did not know was that the mark was the epicentre of vitiligo on her body, and that the condition would completely change her appearance, strip her of her dream to become a model and sway her career path towards politics.

In a milestone, Wangui was among the 14 people nominated by Jubilee Party to represent special interest groups in the East African Legislative Assembly, EALA.

“I believe I was nominated because I have been holding intense campaigns against the discrimination of people with vitiligo and albinism,” she says, adding that despite not winning a seat, she was grateful that her efforts were recognised.

NOT AN EASY JOURNEY

Her journey of “struggling with a visual thing”, she says, has not been easy, and it has been marred with low self-esteem, self-absorption, self-hatred and withdrawal from within and rejection and myths from others.

“When the school nurse called my parents to take me for check-up, the dermatologist told me that I had vitiligo and I did not know what to make of it. I did not know how to react,” she says.

Vitiligo is a skin disorder that occurs when melanocytes (the cells responsible for pigmentation) are destroyed.

The condition, which affects people of all ages, is characterised by white patches on the skin and, sometimes, even the hair turns white.

The blemishes on the skin usually begin on areas that are exposed to the sun regularly and the reason behind this is still being investigated by researchers.

NO CONCLUSIVE RESEARCH

A conclusive research on what causes vitiligo has not been released, but scientists all over the world believe that the cause is genetic susceptibility that is triggered by an autoimmune disorder.

After her diagnosis, the doctor gave Wangui an ointment to apply on her skin.

With time, the spot disappeared, only for a similar spot to appear behind her neck one year later when she was in Form Four and her parents took her for therapy at the Kenyatta National Hospital.

At this time, the spot was actually growing at a noticeable rate and she could not help but get worried about it.

“As time passed by, more blotches appeared in different parts of my body – my hands, back, hands and slightly on the face,

“The jovial teenage girl who always wanted to be a model started losing esteem. I started hating how I looked and I wished I could get rid of the patches. I just wished for uniformity in my skin colour. I wanted to be either black or white – not a mixture of the two,” Wangui says.

Wangui cleared high school to join the Kenya Methodist University in 2007, but even as she pursued her degree in business administration, the white patches on her face became more and more.

MODELLING DREAMS DIMMED

“My dreams of being a model were dimmed. I started wearing several clothes to cover my body as much as I could. I wore gloves, scarfs socks and others so that people could not stare at my white patches.

“Many people started avoiding me, some openly withdrawing from shaking my hands after realising that the palms were white. My boyfriend even broke up with me.

“Some people asked me whether I had gotten burnt and so many other questions that I did not like. The staring, backbiting and myths about vitiligo forced me to change my classes (from fulltime) to part time,” she said.

Wangui was no longer comfortable in her own skin and she became an introvert, avoiding all public appearances and even her own friends and family.

COUNSELLING

“My parents introduced me to counselling. I underwent way too many sessions but nothing worked for me. I still felt insufficient. I had a crushed esteem,” Wangui says.

Ms Wangui said she tried several remedies, including some herbs and carrot juice blended with tomato juice, but they all did not give the results she was desperately looking for. She heard several myths, among them that her grandfather did not pay all the dowry to her grandmother’s family.

“Handling all these things was hard. Furthermore, it became hard for me to secure a job after completing my college studies.

When she finally got a job in one of the banks in Nairobi, she experienced discrimination head-on.

“I was working as a teller but many people avoided my services and I felt really bad. People could queue but not come to my teller window even when I was not engaged. I could sit there idle,” she says.

She had to resign.

TRANSFORMATIVE PROGRAMME

At the beginning of 2012, Wangui decided to seek help in a transformative programme with the hope that she would eventually begin to love herself and appreciate what life had offered her.

“I enrolled in Alabastron classes. The programme is made up of 12 sessions, where you are taught how to transform your thoughts, behaviour, emotions, and ultimately your destiny,” she said.

After the sessions, Wangui says, she changed her perspective about life.

“I started accepting who I was. I accepted that my condition was permanent, and that I was what I believed I was. I chose to believe that I was beautiful and unique and I did not have to be like someone else because I am myself. It really helped me,” she says.

And so Wangui loved herself and no longer stayed indoors. She did not mind gossip or ridicule or stares or anyone’s opinions.

In 2012, Wangui went into politics because she wanted to have a sense of belonging. She wanted a platform where she could help people who have a problem like hers.

NOMINATED MCA

She was a nominated to the Nyeri County Assembly as an MCA in 2013 and was determined to use the opportunity to help people living with vitiligo, albinism and other skin disorders.

“I dedicated my time to fighting for their rights, offering counselling to them, advocating for them to be supplied with necessary lotions and just empowering them.

“I bought a motorcycle which I used to ride on while visiting them and encouraging them to pursue several opportunities that are available for them,” Wangui says adding that this is the point she became famous with the tagline “Vitiligo is beautiful’.

Through her campaigns, Wangui has reached and served over 2,000 people living in vitiligo and albinism in Kenya.

“When I began this journey, I used to go to bed happy about my achievements. Today, I go to bed both happy and sad-Happy, having known that out of my biggest challenge in life, I am able to change someone’s life. I love to know that someone is happy because of what I told them.

“My sadness comes when I think about all the sad stories I hear from people with vitiligo. I have heard stories of rejection, low self-esteem, abuse and myths about vitiligo,” she says.

STRUGGLES

She says people living with vitiligo and albinism struggle with different kinds of problems, depending on their backgrounds and the environment that they live in.

Currently, Wangui works in conjunction with the government under the National Council for Persons with Disabilities through the Ministry of Health.

She has her own database of people living with vitiligo and albinism.

She also runs a website through which people with these two conditions tell their stories.

Apart from counselling, Wangui supplies them with sunscreen lotion to protect them from skin cancer which research shows, they are vulnerable to.

“I want to expand my scope and serve more people in the region and not just in Kenya,” she concluded.