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Vitiligo: A painless psychological torture
Peninah Mukatushabira advocates for fair treatment of people living with vitiligo.
PHOTO/Beatrice Nakibuuka
What you need to know:
In 2016, Mukatushabira joined a vitiligo association that helped her gain confidence and accept her condition
Peninah Mukatushabira has for 16 years lived with progressive loss of her skin colour and each new day, the white patches become more prominent. For a long time, her esteem was badly affected by the condition.
“I wore lipstick all the time. This was before the condition escalated to the other parts of the body. With time, my whole body was affected,” Mukatushabira says.
She kept in camouflage until one day when she was on Facebook, she found Hope Nankunda, who was doing advocacy with teenage girls.
“I got in touch with her and we met. Talking to her made me positive; I started seeing things differently. I liked her enthusiasm from her regular posts on Facebook,” she adds.
Myths about the skin condition
In 2016, Mukatushabira joined a vitiligo association that helped her gain confidence and accept her condition. Members shared tips on how they were managing the condition. Unfortunately, the association closed shop because of limited funding.
Many people are misinformed about the disease and there are so many myths around vitiligo. She recalls a time when she was walking and as two men walked past her, one said he would become rich if he had sex with her.
“Many people are scared of me. Children run away from me. My son did not survive the stigma at his school. It was for him that I conquered my fears and went to his school to explain to the teachers and the pupils my skin condition,” Mukatushabira says.
Since that time, both pupils and teachers now embrace her and understand that her condition is not contagious. “Children now know me and no longer ask my son what happened the way they used to. Sometimes they even ask to feel my skin,” she adds.
How it started
Mukatushaba’s condition started with a white spot on the lips. The patch was so noticeable and many times she was told that she had HIV/Aids, while others claimed she had aborted twins.
“I had completed school and was operating a restaurant in Mbarara City. I would wear lipstick to disguise and when it started spreading to other parts of the body, I used shoe polish to cover them up,” she recounts. She also did a number of blood tests to rule out any severe skin condition. Mukatushabira found solace in her father because he accepted her the way she was.
One day she visited a dermatologist, who after the diagnosis, announced that she had a condition known as vitiligo and gave her books that explained her condition.
The dermatologist told her to learn to live with the condition or disguise using camouflage cosmetics. He also warned her that it would worsen with time, especially if she got stressed. When her fiancé learnt that she had to live with the disease as long as she lived, he abandoned her.
With the reformation of Uganda Vitiligo Association in 2019, Mukatushabira works as the chief mobiliser and often goes to the field to sensitise people about the condition and how to manage it. They are running a campaign dubbed Raising Vitiligo voices.
The psychological effect
Mukatushabira says although vitiligo is painless, its impact goes beyond the visible white patches of the skin, causing emotional distress and depression.
The stigma, poor reception and name calling people with this condition receive, sends them into isolation and many of them contemplate suicide.
“I put on shades, a scarf, long sleeved clothes, and a hat as a way of covering up the patches,” she says.
What experts say
Vitiligo is the loss of skin colour and this can affect any part of the body. What determines the colour of hair and the skin are melanin cells and when they die, a person starts to develop white patches on the skin.
Dr Ronald Katureebe, a dermatologist at Kampala Dermatology, says the condition affects all skin types, but it is more pronounced among the black people.
The disease, Dr Katureebe says, can start at any age and is characterised by loss of skin colour in patches that affect the face, hands, feet or in rare cases, the entire body, premature graying of hair, eyelashes and eyebrows.
The progression of vitiligo may be delayed or even stopped from spreading using immune modulators, but there is no cure for it.
“The disease is autoimmune and non-contagious, so people should not isolate those living with vitiligo. Embrace and love them,” says Dr Katureebe. People with vitiligo are advised to use sunscreen to avoid sunburns in areas that are exposed to the sun.
Love
Manage
“The progression of vitiligo may be delayed or even stopped from spreading using immune modulators, but there is no cure for it. The disease is autoimmune and non-contagious, so people should not isolate those living with vitiligo. Embrace and love them, ” says Dr Katureebe.
