What it means to live with vitiligo

Edwin Nduhura, an accountant, suffers from vitiligo, a condition that causes one to have white patches on the skin. The 40-year-old started developing tiny patches on his face in May 2019. At first they were only noticeable to him but a month later, they started spreading to the neck. He went to AAR Clinic in Ntinda where the doctor prescribed a cream but also advised that he sees a dermatologist for proper diagnosis. 
“I applied the cream but there was no change. I went to see Dr Fred Kambugu of Kampala Skin Clinic who said it was an allergic reaction and gave me a cream and oral medicine,” he says.

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Every day, Nduhura would notice more white patches despite taking his medication. A month later, he went to Unity Skin Clinic at Acacia Mall in Kampala, where he was diagnosed with vitiligo and told to undergo phototherapy for four month. However, because each session of phototherapy costs Shs240,000, Nduhura was only able to pay for one month. He then went to UMC Victoria Hospital where he met a dermatologist who, after a background study and counselling said that stress was aggravating Nduhura’s skin condition.

As the doctor had warned him, his vitiligo kept spreading from the face, to the neck, hands and feet. He decided to travel to the village in order to escape the stigma and endless questions.
“One day, while on Facebook, I had a chat with a one Peninah Mukatushabira who had posted extensively about vitiligo,” he says, adding that this was a life changing meeting since after this, he joined the Vitiligo Association of Uganda and volunteered to become their accountant on a part time basis. He also got the opportunity to meet other people in a similar situation and this gave him more confidence.

Stigma
“I do not wish this on anyone. Vitiligo deprived me of a chance to continue with my education,” says Leyton Octovah Babirye.
At a young age, 18-year-old Babirye lost both her parents. She grew up with her relatives in Kenya and at 11 years of age, she started developing white patches on her skin. Her relatives tried to take her to different hospitals but none of the treatments given worked. 

“I would be pulled out of class while other children were studying to go under the sun to help my skin regain its colour. The children were so rude to me and called me all sorts of names,” she recalls. 
When the disease worsened, her relatives brought her back to Uganda where she continued with her education but the stigma at school was unbearable. This affected her psychologically and had a great impact on her performance. 

She wears shades, a hat, jumper, scarf, long sleeved shirts and trousers even on hot days to avoid rude stares from people she meets every day. She would isolate herself until she learnt of the Vitiligo Association of Uganda where she met others with the same condition. 

What is vitiligo?
Normally, the colour of hair and skin is determined by melanin. Vitiligo occurs when the cells that produce melanin stop functioning. It affects people of all skin types, but it may be more noticeable in people with brown or black skin. 
Dr Ronald Katureebe, a dermatologist, says the condition occurs when melanocytes (the skin cells that produce melanin, the chemical that gives skin its colour or pigmentation) are destroyed by the body’s immune system.

 “Vitiligo usually begins with a few small white patches that gradually spread over the body over time. It may start on the hands, forearms, feet, and face but can develop on any part of the body, including the mucous membranes (moist lining of the mouth, nose, genital, and rectal areas), the eyes, and inner ears,” he says.
The disease is largely known as an autoimmune disorder where the affected person’s immune system may develop antibodies that destroy melanocytes.  While about 30 percent of vitiligo cases run in families, physical and emotional stress are known to be common triggers. In fact, it could be a combination of all these factors. 

Symptoms
•Patchy loss of skin colour, which usually first appears on the hands, face, and areas around body openings and the genitals.
•Premature whitening or graying of the hair on your scalp, eyelashes, eyebrows or beard.
•Loss of colour in the tissues that line the inside of the mouth and nose (mucous membranes).

According to Dr Katureebe, universal vitiligo affects nearly all skin surfaces, causing discolouration on the entire skin surface. The most common type of vitiligo is the generalised one where the discoloured patches often progress similarly on corresponding body parts (symmetrically). Segmental vitiligo, which tends to occur at a younger age, affects one side of the body. Localised (focal) vitiligo affects a few areas of the body while acrofacial vitiligo affects the skin on the face and hands, and around body openings, such as the eyes, nose and ears.
Treatment options
It is important to note that there is no cure for vitiligo. However, medical treatments can be done to create a uniform skin tone by either restoring colour or eliminating the remaining colour.

Using sunscreen of an SPF above 30 shields the patient from direct ultraviolet rays thereby minimising tanning from sunburns and a contrast between the normal and affected skin. If the vitiligo affects the hair, hair dyes are recommended. Camouflage makeup can also be helpful. 
“Topical treatment creams that calm the immune system from hurting itself are usually recommended. The immune modulator creams and oral pills containing steroids can be used to help in re-pigmentation and the results may take up to three months but they should be taken under the supervision of a dermatologist,” Dr Katureebe says.

Phototherapy is where the affected area of the patient is exposed to ultraviolet light at least three times a week for several months to help stimulate the cells that produce colour. This may cost about Shs50,000 per exposure, depending on where you go.
Excimer laser treatment, a type of phototherapy can also be used for patients who do not have large or widespread vitiligo. For people whose vitiligo affects the head, neck, upper arms and legs, combining oral Psoralen and UVA is recommended. Also, a type of tattooing can be applied (micro-pigmentation), especially on the lips. 

For resistant cases, Dr Katureebe recommends a melanocite graft where skin is taken from one part of the patient that is not affected to the affected area to stimulate the production of melanin in the affected area. This surgical procedure may cost about Shs2m, depending on the size of the patch that has to be covered. The graft should be monitored closely and in most cases, the result will be positive although there are chances of it failing. 

Complications 
Although vitiligo is mainly a cosmetic condition that is painless, people with vitiligo may experience sensitivity to sunlight and usually get sunburns,   some abnormalities in their retinas and some variation of colour in their irises (the coloured part of the eye). In some cases, there is some inflammation of the retina or iris, but vision is usually not affected.

People with vitiligo are prone to getting other autoimmune diseases (in which the body’s immune system causes it to attack itself), such as diabetes, alopecia, thyroid problems and people with autoimmune diseases are at risk of developing vitiligo.

Like Babirye and Nduhura, people with vitiligo usually feel embarrassed or anxious. Sometimes people are rude, they may stare or say unkind words to them. This causes a person with vitiligo to develop low self-esteem, become anxious or depressed and a desire to isolate themselves. 

When you notice patches on your skin, Dr Katureebe advises, see a dermatologist as soon as possible because there are other skin conditions such as pityriasis alba, tinea versicolor, chemical leukoderma and albinism that may cause the skin to lose pigmentation.