You need a thick skin to live survive the prejudice

Wangui Njee 26, at the Nation Centre on June 25, 2016. PHOTO | JEFF ANGOTE

What you need to know:

  • For a long time Wangui Njee let vitiligo get the better of her but when she decided to love herself the way she was, life became a lot more meaningful.
  • Intolerance is the biggest problem she has had to cope with, adding that life could not have been more difficult. “Of course it was hard making friends but I think that was because I wasn’t very confident about myself,” she says.
  • All sorts of theories have been bandied around regarding her condition. A neighbour once told her mother that they needed to sacrifice a goat and go and face Mt Kenya to undo whatever curse had been pronounced on Wangui.

It started as a light, small blotch on one of her eyelids­, she doesn’t quite remember which one. Soon, another one appeared on the back of her neck.  However, Wangui Njee, then 13 and  in Form Two at Pangani Girls’ Secondary School, was not unduly worried when the dermatologist her mother took her to diagnosed her with a condition known as vitiligo. As a teenager, she assumed it was one of the innocuous changes that came with teenage, which would go away sooner rather than later. That was in 2004.

The dermatologist prescribed an ointment which she had to apply and then sit in the sun. It gave her blisters but seemed to have largely solved her problem,  reducing the  blotches  to no more than a few scattered, “dismissible” specks elsewhere on her body.

“Soon it began attacking the tips of my fingers too, but the medication was working,” recalls Wangui, now 26. “I figured it would soon be gone and didn’t give it much thought.”

By then the pale skin had all but disappeared.

Then, in 2007, the depigmentation returned with a vengeance. “The specks were spreading uncontrollably on my face. My hands, too, turned white almost overnight. It just happens; you wake up one morning and find that the patch has grown bigger. “I started feeling very uncomfortable,” Wangui says.

Alarmed, Wangui started looking for information on vitiligo. “I learnt that vitiligo was an autoimmune but non-contagious skin condition. But I was struggling to accept what was happening to my body. I began to withdraw and would remain locked up in the house most of the time,” she says. Wangui, who was then pursuing a Bacherlor of Commerce degree at Methodist University, says intolerance is the biggest problem she has had to cope with, adding that life could not have been more difficult. “Of course it was hard making friends but I think that was because I wasn’t very confident about myself,” she says.

“Back then I would cry myself to sleep,” she says, adding that she suffered severe bouts of depression and self-stigmatisation.

After graduating, job hunting wasn’t any easier so she gave up after failing to get a job in the few places she applied to.

She believes she failed the few job interviews, not because she was not qualified, but because of self-sabotage. “I had this mentality that they would not pick me because of the way I looked,” she reveals.

PERIODS OF STABILITY

Wangui Njee 26, at the Nation Centre on June 25, 2016. PHOTO | JEFF ANGOTE

And that is how she ended up in politics. 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). Aware of the problems those with vitiligo face, Wangui has taken it upon herself to initiate debate on the condition in the assembly whenever an opportunity presents itself.  The motion to create awareness of the condition, which she brought before the Nyeri  County Assembly, was passed a month ago and she is now pushing for it to be made into a law.

“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,” says Wangui.

Today the entire front of her body is white while the pigmentation on her back is slowly returning in patches. But it is darker, rougher and less supple than it was before.

She has intermittent cycles of pigment loss, followed by periods of stability. “I am not using anything at the moment apart from sunscreen,” she says.

There was a time Wangui would have done anything to have her old skin back and was constantly on the lookout for whatever promised to undo the nightmare she was living. In 2012, when the vitiligo had stripped her hands of any colour and  enlarged  the blotches on her face, she went to Kenyatta National Hospital for phototherapy, a treatment with ultraviolet (UV) radiation, which was meant to improve her skin colour.

It did, but because it involves immune suppression — preventing the destruction of the melanocytes — it introduced new complications. The UV rays killed her white blood cells, reducing their count so drastically that the doctor asked her to undergo an HIV test. After it was established that her low white blood cell count was due to phototherapy, she was advised to discontinue the treatment.

“The therapy helps for a while but then the vitiligo returns. So I figured, I can’t keep doing this,” remarks Wangui. “But I was so determined to stop it from spreading, and I’d have done anything. If someone told me to do something,  I’d go and try it.”

That same year she visited the Centre for Infectious and Parasitic Diseases Control Research (CIPDCR) in Busia, where she was given an injectable drug. Her mother hired a nurse to administer the doses, but Wangui, who  is trypanophobic (she fears needles and injections), would disappear from home every time the nurse was scheduled to come.

But she was so depressed and insecure about herself that she had to go for counselling.

It was thereafter that she realised she needed to change her attitude towards her condition. “I realised  that I needed to start loving myself as I was,” she says. It was also at that time that she realised, after doing extensive research with her mother’s assistance, that taking carrot and tomato juice delays the progression of the depigmentation. She says she has learnt most of the things online since there are no local researchers on the condition.

She resolved  to think positively instead of wallowing in self-pity. “I am sure when you look into my eyes you see a lot of sunshine. It is all because I learnt to love myself more. It is not my outward appearance, it is who I am.”

Besides, even though the conventional treatments restored pigment (colour) to the patches, the effect did not last. She learnt that treatment could not stop the condition from spreading.

Between 2012 and 2013 — the period before the General Election — it spread really aggressively, causing her pigmentation to all but disappear. “I looked like an albino”, she says, adding that it was probably because she was stressed.

SELF LOVE

But even after years of research, Wangui still does not fully understand what happens. The pigmentation just disappears and returns. Although she has noticed that when she is happy and stress-free the pigmentation returns faster, she has been closely watching her diet as well.

“When my skin turned all white, I started geting used to it.

Actually, I think I was fine with it that way rather than with the dark patches when, suddenly, I started getting the dark patches back,” she says. 

All sorts of theories have been bandied around regarding her condition. A neighbour once told her mother that they needed to sacrifice a goat and go and face Mt Kenya to undo whatever curse had been pronounced on Wangui.

Yet another said  her grandfather might not have finished paying bride price for her grandmother, and that he needed to do so to “cure” her. 

“But this stigmatisation is because people don’t know what vitiligo is. We have had sensitisation campaigns for albinism but not for vitiligo,” she says.

But Wangui has got so used to  her condition that when a colleague recently told her that there was a vitiligo specialist in the country,  she made no effort to look for the doctor. “I told them, ‘You know what, I love myself the way I am. I am comfortable in my skin.’”

Not that she does not have bad days. “Even though I am past the stares, I still have low moments like everybody else. It takes strength and self-acceptance  to live with vitiligo,” she says, adding that that’s why  she bought the Karizma ZMR motorcycle she rides “to nowhere”.

 “When I’m feeling low I hit the road. Having the wind blowing in my face distracts me,” she says.

“Just recently I was in a restaurant when some guy asked, ‘Is that a monkey or what?’ I felt as if I had been stabbed. Such moments just deflate me,” she reveals.

“These are the battles people like me are constantly fighting and all we want is for the government to help us. We are not asking for much, just for awareness creation,” she says.

 I just want Kenyans to know we are not to be feared or avoided. We are as normal as any other person. Our pigmentation just decided leave at some point in our lives,” she says in jest.

“We want the government to support by giving us free sunscreen and periodic eye check-ups. This is already being done for albinos,” she says. 

Wangui is such a vocal campaigner that today she is invited to homes to talk to children with vitiligo. “Sometimes I’m called by a neighbour or a relative to speak to people  who lock up their children children who have the condition.”

“I am mentoring two teenagers who just won’t get out of the house. Yet this is the stage during which they are supposed to be exploring the world. They are afraid of going out and getting judged by a cruel public, where some are not afraid of making snide remarks in  their faces,” she says. “I tell them I have gone through all that and teach them coping skills.”

“These are young people who have sunk into depression. I believe we all suffer the same experiences but I believe that at the end of the day, it boils down to loving yourself.

What sufferers need is counselling and understanding the condition. And  having a  supportive family also helps,”  she says.

Wangui has become a vitiligo ambassador in the county. She says she recently learnt that, of the 500 or so registered people living with vitiligo and albinism, only 20 pick sunscreen lotions and lip balm from the county health facilities.

“So I have  been picking up  the sunscreen and delivering it to their houses using my bike,” she says.

Nyeri nominated MCA Wangui Njee on her motorbike along Nyeri-Nanyuki highway on July 20, 2016. PHOTO | JOSEPH KANYI

__________ 

In numbers 

2004

The year Wangui Njee began suffering from vitiligo

2012

The year the disease stripped her hands of colour

2013

The year the disease spread aggressively due to the stress of the pre-election period

________ 

 

About Vitiligo

Vitiligo is a skin depigmentation disorder in which pigment cells (melanocytes) stop producing melanin, leaving in their wake patches of colourless skin. Melanin is what gives colour to the skin, hair, and eyes.

Usually, it  starts in small patches then gradually spreads over the years.

The condition affects all races and both sexes equally, types but is more pronounced in people with dark skin. It can affect many parts of a person’s body, one side or part of a person’s body, or just isolated patches of a person’s body.

Treatment of the condition tends to improve the appearance of the skin but does not cure it. It comes in the form of ointments and creams that are applied to the skin, oral medicine, as well as a combination of medicine and ultraviolet rays. Cosmetics can also be used to cover the white patches, and in some cases skin grafting can be done.

It is unknown what precisely causes vitiligo, although it is thought to be a combination of genetics and an autoimmune disorder. If someone in your family has vitiligo, then you are more likely to get it.

Between  1 and 2 percent of the world’s population suffers from vitiligo. Many of those affected start seeing signs in their 20s, but it can occur even earlier.  There are no statistics for people living with the condition in Kenya.

Vitiligo results in reduced quality of life and psychological problems in many patients, especially in adolescents and in females.

When it affects huge areas of the body, like in  Wangui Njee’s case, vitiligo can be very cosmetically disabling. She says when it started, it stripped her off of all her self-confidence. She became reclusive and would not talk much.

“I am naturally a very talkative person, but there is a time in my life when I didn’t talk much. I felt, sort of inadequate,” she offers. “What bothers me is the staring.”  

“Vitiligo is not painful. It is not contagious. It is not an infection. It is not a curse and neither were we burnt with acid or scalded. We are not albinos. It should not be construed as ‘leprosy’ and people affected by vitiligo should not be discriminated against. People ask questions like “did you get burnt?’” says Wangui, who admits she has had to develop a thick skin to be able to handle prejudice.