Uniquely beautiful: Vitiligo is nothing to be ashamed about

If you’ve heard of Wangui Njee and fashion model Winnie Harlow, you may already be familiar with a skin condition that health experts say affects between 0.5 and one per cent of the population worldwide.

It happens when skin loses its pigment (colouring); causing white patches of skin that can sometimes cover the entire body. While Harlow has found stardom, that is not the reality for the vast majority of people with vitiligo.

In 2004 while in Form Two at Pangani Girls High School, Wangui, Kenya’s Vitiligo Ambassador noticed that some parts of her skin had started pigmenting. Little did she know how that moment would impact her life forever.

The diagnosis

A white patch that looked like chalk dust to her school teacher appeared on her eyelid

At the school dispensary, Wangui feared for the worst when the school nurse told her to call her parents.

“I was told to call my parents and my mother came for me. I was taken to a dermatologist at Nairobi Hospital and was diagnosed with Vitiligo,” said Njee. It was the first time she had ever heard of the condition.

She has been living with the condition for 18 years now.

“My family has always been my support system and so have my close friends who have always reminded me that it is just a beautiful condition God gave me,’’ narrates Njee.

It was long after she had forgotten about the encounter in 2004 that the depigmentation returned with a vengeance.

This time, it appeared on her neck and later spread to her legs when she completed Form Four.

She became very self-conscious about herself and would prefer staying indoors to avoid the awkward stares and talks.

“I would put on earphones and a hoody when it was absolutely necessary for me to go out, otherwise I preferred locking myself in the house,” Njee said.

It was when she was searching for formal employment, after completing her studies at Methodist University where she was  pursuing a Bachelor of Commerce degree that she experienced the most discrimination.

Stigma and discrimination

Potential employers would not give her a second look during interviews.

She later landed a job as a teller at a bank, but opted to quit due to unwanted glances from the customers that made her feel uncomfortable.“I would stay a whole day without getting a single customer. It was very discouraging,” she revealed.

She quit formal employment shortly after and opted to join politics, a decision that completely changed her life.

Njee started accepting her condition and explained to her mother that she did not want to be on medication all her life and discontinued taking them.

“I stopped covering myself up and accepted myself just the way I am. To some, I might not be the most beautiful, but to myself, I am the most beautiful person I have ever met in all ways not only physically,” she added.

As soon as she stopped taking medication at age 16, she turned fully white. She said there are days the discolouration reappears and then disappears.

She made it a point to urge persons living with vitiligo to love themselves and encouraged families to support and love them. She told parents to let their children out to play with others rather than hide them.

Create awareness

She joined the TNA party campaign trail in Nyeri before the 2013 General Election, and was later nominated as a Member of County Assembly (MCA).

As an MCA she advocated for increased budgeting for purchase and distribution of sunscreen, free National Health Insurance Fund (NHIF) and counselling sessions for those affected.

She has since moved from active politics and now runs a campaign with the government dubbed Youth and Social Security to represent people with Vitiligo.

She also runs a Facebook page: Vitiligo is beautiful, which raises awareness of the condition and the psychological and negative impact it has on individuals living with it and their families.

The condition can be classified into Segmental Vitiligo (SV) and Non-Segmental Vitiligo (NSV) with NSV being the most common type.

There are many treatment methods available in the markets, which can improve the appearance of the skin.

They range from creams that control inflammation, a combination of medications and ultraviolet light, therapies including depigmentation and combining psoralen and light therapy and surgery, such as skin grafting, blister grafting and tattooing among other treatments.

The exact cause of vitiligo is unknown, although most experts believe that it is an autoimmune condition in which the body’s immune system mistakenly attacks and destroys certain cells within the body.

Kills melanin

Most people who have vitiligo will develop the condition prior to their 40th birthday; about half develop it before the age of 20 and tends to run in families.

Vitiligo is a condition that causes the loss of skin colour in patches and occurs when cells that produce melanin die or stop functioning.

The white or light patches mostly start from small areas, mainly those exposed to the sun, and spread to other parts of the body over the years.

While it can affect people of all skin types occurring either on one or many parts of a person’s body or just isolated patches of a person’s body, it is more visible in people with dark skin.

Inside the mouth and nose may also be affected. Unfortunately, the extent and rate of the colour loss is unpredictable.