Treated as an outcast due to rare skin condition

Claire Nakigozi is slowly recovering the skin pigment she had lost due to vitiligo, a skin disorder. Photo by Dominic Bukenya. 

In Summary

Not only does vitiligo strip the skin of its pigment, it damages the self esteem of its victims. Gillian Nantume spoke to a woman who has battled the rare skin disorder and associated negative social beliefs for the past 16 years.

The appearance of someone’s skin plays a big role in their self-assurance, social relationships and level of attraction in relationships. Claire Nakigozi, 33, reads out those words from a piece of paper.
Sixteen years ago, while in high school, Nakigozi had a perfect skin. Then, one day, she noticed a small white mark below her left wrist.
“I was 17 at the time, and did not pay attention to the mark. It looked like I had burnt myself. It disappeared within a few days. After a few weeks, the mark reappeared in the exact location. Some white dots also appeared on my fingers.”
During school holidays, she showed the marks to her aunt, who advised her to stop using strong lotions that were causing her skin to react.
“She did not know that it was the beginning of vitiligo. We were both confused. Even my closest friend – who became my husband – told me not to worry about it.”

The patches spread
During her Senior Six vacation, Nakigozi lost her father. “I faced isolation because of family wrangles. I did not belong because my mother was not the wedded wife.”
During that stressful time, the white spots increased in size and spread all over her body. Soon, the spots were big patches of white.
“I had older siblings, twins, who had never been formally welcomed into the clan,” she says.

“During my father’s last funeral rites, the elders said the twins’ anger had caused my condition. They had to be appeased.”
In ancient Buganda tradition, it was believed twins were demi-gods, who could, with the help of higher gods, “burn” anyone who offended them.
“The twins prepared a feast and we ate it. I thought I would be healed but the patches continued to spread. I was confused. I did not know what was happening to me. While my mother’s sisters told me to pray, other people were telling me Kiwanuka, god of lightning and thunder, was angry,” recalls Nakigozi.
When she began working, Nakigozi saw people with her skin condition. Even though she knew it was vitiligo, she decided not to seek medical help.

The battle in the mind
At the time, Nakigozi had a son and was living in Arua District with her husband. The ‘white’ patches on her skin stood out. She stayed indoors to avoid questioning looks from those who said she looked like a ghost.
The skin changes destroyed her self-confidence. To ease her stress, her husband rented a house with a perimeter wall.
“Friends and in-laws deserted me, fearing they would catch vitiligo. The bold ones said I had touched the baskets that contained spiritual gifts of the twins. I had never practised witchcraft and these accusations depressed me. I could not sleep and eat. I neglected my child; as I watched myself becoming white, I spent whole days crying. I wore only long-sleeved shirts that covered my fingers, long skirts and neck scarfs,” recalls Nakigozi.

At home, relatives planning a cleansing ceremony, called her back.
“I knew I was going home to die. I wanted to die. People told me I did not deserve to be in public.
However, my cousin Gloria Tibakunirwa, picked me from my father’s home and when I told her I wanted to die; she drove me to see Dr Noeline Nakasujja, a psychiatrist.”
The psychiatrist immediately gave Nakigozi anxiety medication.

“As we spoke, I started to feel a sense of relief. Here were two people who cared enough to listen to me. It took a huge weight off me. That night, I blacked out. I had not slept in six months.”
She continued to see the psychiatrist on a monthly basis for a year.
“She told me I was important. Instead of focusing on my skin condition, I should look after my son and husband, who loved me.”
With this encouragement, Nakigozi returned to school and graduated with Bachelors degree in International Business.

Isolated at work
“I have now realised that the people you associate with can make or break you,” says Nakigozi, who faced discrimination at work.
“Colleagues gave me sidelong looks; some asked how I got the job. If I picked someone’s pen, when I returned it, they would use another pen to push it into the dustbin. In the canteen, if I joined a table, people would immediately move away.”

A dermatologist told her to learn to live with her incurable condition.
“I would wake up at 5am and spend an hour applying MAC NC45, a dark makeup foundation to conceal the patches around my eyes, mouth, nose and ears. A tin of concealer lasted two weeks and cost Shs 44,000. When I failed to find it on the market, I would not go to work. My husband would spend days looking for alternatives.”

As a sales person, Nakigozi had to be out in the sun all day, which caused irritation and painful wounds on the depigmented skin.
In order to protect her skin, Nakigozi had to use sunscreen lotions.
Seeking treatment
“I told my children that I had been burnt by water. They hate hot water, even when I finally explained what vitiligo was.”
One of her clients directed her to a dermatologist who was trying out a new treatment.

“I had met this doctor five years ago but when we met again in May 2014, he was surprised that 80 per cent of my body was white.
The dermatologist asked if she wanted to go “white” since depigmentation would have been faster. Nakigozi wanted to remain black, even when he told her that it would take a longer time.
“He said that once we began treatment, I should not allow stress in my life and never miss the sessions.”
The doctor placed her on phototherapy and fractional laser treatments, twice a week. In the beginning, she spent five seconds under the machine during each session but now she spends one minute and 32 seconds.

Progress
“I lost my job this year through unfair dismissal. With two children and dependants, life is not easy, but I still go for treatment.”
Nakigozi spends Shs 20,000 on treatment per week. When she was broke, the clinic provided free treatment.
“I am happy with the results,” she says.
The natural colour has returned to her arms, legs, neck and face. However, her hands and feet are still white.
“Some relatives are still angry with me for choosing to become ‘white’ instead of appeasing the spirits.”

Possible causes
Vitiligo, which is characterised by sharply demarcated areas of depigmentation, occurs with an incidence of about one per cent in most racial groups.
The lesions, which develop gradually and which rarely resolve, may be solitary or multiple, in which case they are either distributed randomly (vitiligo vulgaris) or peripherally.
Loss of melanin may result from an autoimmune mechanism since many of those affected also have other autoimmune disorders such as alopecia areata, Addison disease, hypo- or hyperthyroidism, diabetes or systemic sclerosis.
Other cases of vitiligo can be caused by exposure to phenolic compounds.

Vitiligo affects people of all skin types, but it may be more noticeable in people with darker skin. The condition is not life-threatening or contagious. It can be stressful or make you feel bad about yourself. Treatment for vitiligo may improve the appearance of the affected skin but does not cure the disease.

Management
Camouflage cosmetics may help some patients to become socially integrated. Exposure to ultraviolet radiation after oral or topical pretreatment with methoxsalen (PUVA therapy) may induce a small degree of pigmentation, but this form of treatment must be administered by specially trained dermatologists. Photoprotection is important to avoid sunburn in the depigmented areas.