Cruel stares and negative comments aren’t always easy to ignore, even for those with extremely thick skin. Just imagine how much harder it is to cope when one’s skin is what’s actually drawing the harsh criticism. Most people remember Michael Jackson for his great musical talent and astounding star quality. However many people also judged him for altering the colour of his skin which came as a result of a condition called Vitiligo.
Vitiligo is a chronic, persistent and often progressive skin condition, characterised by a sudden loss of melanin in the skin, which turns it milky white when cells that are responsible for pigmentation die. It affects one in every hundred people and can strike anyone at any time regardless of age, race or gender.
Initially, vitiligo starts as a simple spot, a little paler than the rest of the skin. But gradually, as time passes, this spot become much paler until it becomes white. According to Saara Nangula who lived with vitiligo for nine years now, her condition started when she was 23 years old. “It all started with a white little spot on my neck, but because it started so small I did not really pay attention because it was kind of a rash. It spread on my face and other parts of the body,” she stated.
Where vitiligo comes from?
The exact cause of vitiligo is not known, but some researchers believe it to be an autoimmune disorder when the patient’s immune system becomes overactive and destroys the melanocytes. It may also occur due to a genetic oxidative stress imbalance. Critical sunburn and exposure to some chemicals may also lead to vitiligo. Vitiligo can be hereditary but not contagious.
Vitiligo signs and symptoms vary considerably from person to person. Some may only acquire a handful of white dots that develop no further while others develop larger white patches that join together affecting larger areas of the skin.
Non-segmental vitiligo is the most common type of vitiligo and the patches often appear equally on both sides of the body. This is mostly common with the skin that is exposed daily to the sun, such as the face, neck and hands, but can also appear in other areas such as the backs of the hands, arms, eyes, knees, elbows, feet and mouth.
On the contrary, segmental vitiligo spreads more rapidly but is considered more constant than non-segmental. It is more noticeable in early age groups. It usually tends to affect areas of skin attached to nerves arising in the dorsal roots of the spine. It is more stable, less erratic and responds well to topical treatments.
How vitiligo affects you
Vitiligo is one of the most psychologically, emotionally and psycho-socially devastating chronic skin conditions, which has a major impact on both patients and their families.
If the vitiligo is noticeable to other people, embarrassment can lead to self-esteem problems and lead to depression. Saara states that her condition affected her emotionally. “Worse of all is when you enter like a shop and everyone has to stop everything they are doing and stare at you,” she explained. She further lamented as to how she was in a relationship and had to first get the approval from the family and friends about how they feel. She faced rejection and avoidance. “I was stigmatized. One day I was at the taxi rank and a man shouted that I was cursed and I should take back people’s things,” she adds.
Despite all the negativity, Saara holds her head high because she believes that people have no idea what the condition is.
Although vitiligo does not develop into other diseases, people with the condition are more likely to have other autoimmune disorders, such as thyroid problems or pernicious anemia. There is also an increased risk of sunburn in the affected areas, hearing loss and eye problems such as inflammation of the iris. Other than the appearance of the spots and occasional itchiness, vitiligo does not cause any discomfort, irritation, soreness or dryness in the skin. Saara states that she does not see vitiligo as a disease. “I do not feel sick and I am not going through any kind of treatment,” she expresses. The total area of skin that can be affected by vitiligo varies greatly from individual to individual and in the majority of cases, the affected areas remain discolored for the rest of one’s life.
However, there are a number of remedies that can help decrease the visibility of vitiligo on the affected areas of the skin such as exposing the affected skin to UVB lamps. Home treatment is recommended because it is most effective when the patient uses the lamp daily. Saara narrates that as her condition started spreading around her body, she started to seek for medical attention but was told that the condition could not be treated. “I looked for treatment and I started buying medicine from Pakistan but did not help either,” she adds. Ancestral fires or witchcraft have been one of the most popular definitions of vitiligo in the communities and up to now it’s still vibrant. Some perceive it as bad luck or a curse. It’s through such myths that the communities develop hatred and hostile feelings against people with vitiligo. “Apparently it has something to do with a lack of Vitamins. Others say I have eaten game meat and should stop whereas others say that it is an indication of wealth coming my way,” said Saara.
As the general public remains ignorant of this condition and continues with segregation, stigma and rejection on those affected, Saara suggests that people get educated on what the condition is. “It affects any race and any age group,” added Saara. “I have done research and met other people who have the same condition, we interact and we support one another. We came up with the idea of Celebrating World Vitiligo Day 25th June each year and people with the same condition in the world celebrate it too,” concluded Saara. Vitiligo is not as serious as people make it sound, however people just need to raise more awareness on the condition. Lastly, Doctor Mekelaye Nghaamwa advises that those with vitiligo embrace their condition and transform it into something positive. “You are still beautiful even with vitiligo. The skin changes, yes, but your identity remains.”