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On a journey to end stigma against vitiligo
Balinda says the key to living with Vitiligo is knowing that the condition cannot limit your abilities. Photo/Courtesy
What you need to know:
- With the world commemorating Vitiligo Day June 25 every year, we bring you the story of Mustafa Balinda who after facing stigma because of his condition left school and evaded any activity that put him in the public eye. Now a budding model and photographer, Balinda is hopeful that his story will encourage others with the condition to seek help
“Vitiligo affects 0.1 to two percent of most populations worldwide. It occurs at any age and affects both sexes equally,” says Dr Edward Ogwang, a dermatologist.
27-year-old Mustafa Ibrahim Balinda alias Balinda Musti is a photographer and model living with vitiligo, a skin condition. At six years, he spotted a white patch in his armpit which he ignored since it was not painful. However, after a few months, it started spreading to other parts of the body and this prompted him to show it to his parents.
“My parents took me to a skin clinic in Wandegeya, Kampala, where the doctor said I had Vitiligo and gave me tablets that I was to take daily and go back for a refill every two weeks,” says Balinda.
Because the medication was expensive (Shs300,000 per visit), Balinda only took it for six months and gave up, especially when the doctor said it would just slow the progression of the disease but not cure it.
He recalls being taken by his mother to a traditional healer who promised to heal him as long as he was able to bring white eggs and milk for the gods. He also told Balinda and his mother that the gods had ‘burnt’ Balinda’s skin as punishment for not performing the traditional rites following the birth of twins, a popular misconception in some communities in central Uganda.
Hoping against hope, Balinda and his mother presented the gods with the requirements and he was given herbs. These, however, caused a number of side effects including loss of appetite and nausea every time he ate food.
“I was given some grass mixed with water, milk and honey and was told to bathe with the liquid. I was also instructed to only bathe from outside, which I did for almost a year without any change,” says Balinda.
When Balinda joined Senior Two, the white patches on his body had spread.
“I would wear clothes that would hide my condition, including long jackets, socks and gloves. I hated being stared at and asked too many questions by other students. However, the patches continued spreading and at some point, I could not cover them anymore,” Balinda shares, adding that he lost friends who feared the condition would be transmitted to them.
“They would call me names and refuse to share anything with me. I felt so alone and discriminated against which forced me to stop going to school,” Balinda adds.
Self-acceptance
“At home, my father saw some of the items I had acquired from traditional healers under my pillow and burnt them to ashes saying our family believed in Allah. He also encouraged me to be proud of who I was and also urged other elders to counsel me,” he says.
He adds that his parents supported him and showered him with love, which he says motivated him to accept himself.
“I opened a Tik Tok account and started posting videos talking about my condition. One day, I took my shirt off and even with all my patches exposed, I recieved a lot of positive feedback.
Nowadays, Balinda is a model and photographer. He adds that the patches are painless but he suffers irritation after exposure to the sun.
What is vitiligo?
According Dr Edward Ogwang, dermatologist, vitiligo is a condition where the skin loses its colour and causes pale white patches on the skin.
“It is an autoimmune disease in which the immune system mistakenly attacks healthy melanocytes. When melanocytes are destroyed, no pigment (melanin) is produced, leading to the white spots,” Dr Ogwang says.
Just like Balinda, most patients with vitiligo report feeling embarrassed, which leads to low self-esteem and social isolation. Many are frustrated with their condition, especially with the patches not responding to treatment. They become easily irritated, develop mood swings and get depressed in some cases.
Dr Ogwang notes that it is important to address the psychosocial effects of vitiligo to prevent depression, which may lead to suicide attempts.
Because people with vitiligo are prone to sunburns, it is important for them to use sunscreen and wear protective clothing.
The types of vitiligo include focal vitiligo where there are just a few spots in one area, generalised vitiligo where the spots are distributed all over the body and segmental vitiligo where the patches affect only one side of the body.
Treatment options
“Treatment methods are similar for all the types even though there is no cure for vitiligo. Segmental variant is usually more resistant to treatment,” explains Dr Ogwang.
He adds that cosmetic camouflage or concealment does not treat vitiligo but is helpful in patients who still suffer low self-esteem and are unable to socialise because of the condition. Another option are corticosteroid creams and a group of medications called calcineurin inhibitors that suppress the inflammation from autoimmunity that causes loss of pigment, hence allowing for repigmentation.
Phototherapy using ultraviolet light A. (PUVA). A photosensitising medication called psoralen is first applied to the vitiligo spots or swallowed prior to exposure to ultraviolet light. Side effects may include severe sunburn and skin blistering. Appropriate dosing helps prevent this side effect. However, with Narrow Band Ultraviolet B (UVB) therapy, no psoralen is required prior to exposure to UVB and this minimises the side effects.
Excimer light
According to Dr Ogwang, this is another form of phototherapy that delivers a specific wavelength of ultraviolet B. Correct dosing is important to prevent side effects such as painful reddening of treated area and erosions.
Dr Ogwang notes that these treatments are effective in some patients but the response varies. The location of the spots might determine treatment response; for example facial lesions usually respond much faster whereas cases of segmental vitiligo and those that involve the lip mucosa are more difficult and respond poorly.
He adds that experimental treatments being explored in the field of vitiligo research include melanocyte transplant where a sample of normal skin is harvested and taken into the laboratory to grow melanocytes (pigment producing cells). These are then transplanted back into the depigmented (white spots) skin to restore its colour.
It is important for the community to know that while vitiligo may cause self-consciousness, the condition is not dangerous. It is not a form of skin cancer and it is not contagious.
