Putting Judgments to Rest: Vitiligo, a Rare Skin Disease

Cow. A word many men and women, boys and girls are called when they have vitiligo. Their blotches rarely shed; rather, more often than not, they spread.


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Research shows that name-calling can have a strong effect on how we perceive ourselves. Perhaps by reflecting before we pass judgment on people with this skin disease, or any other condition that makes someone different from the norm, we can tackle low self-esteem. So, perhaps putting our judgments to bed will allow for a good night’s rest.


Vitiligo, a type of leukoderma – which literally means white skin – is an acquired skin condition through which the skin loses pigmentation. It is a rare disease, one many of us may have heard of, but do not fully understand. Perhaps this is because not even specialists do. The cause of vitiligo is yet to be understood, a cure is yet to be found, and awareness in many regions is sadly lacking.


Research shows that about 2 percent of the universal population has the skin condition, although numbers vary between countries and different studies. Though the percentage of people with vitiligo varies from region to region, people of different ethnicities and different sexes have equal chances of being affected. Different factors can, however, increase or decrease the risk of developing vitiligo.


A person with vitiligo lacks a chemical called melanin, which is produced by special skin cells called melanocytes, which pigment the skin, protecting it from easy sun damage (sun burns the pale areas extremely easily). A lack of melanin results in pale, white patches developing on the skin. Research shows that these patches can develop anywhere on the body, but usually appear on skin most exposed to the sun, such as the face, hands, and neck, as well as, around body openings such as the eyes, nostrils, mouth, and genitals, in body folds such as the armpits and groin, and where skin has been damaged such as by a cut or burn.

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Research has associated the skin disease with autoimmune conditions, overactive thyroid glands, and genetics. Even though vitiligo is common within a family line, researchers say it is not necessarily hereditary, because so far they have not been able to identify one common gene that causes the condition. Thus it is argued that several factors contribute to causing vitiligo, but the true answer is uncertain.


“No, no one else has the condition {in my family}. However, my dad started getting grey hair very early, maybe in his 20s. We don’t know if it’s in any way related to my condition. It is a possibility that hair pigmentation and my skin pigmentation have some kind of connection, “ says Dinara Utarova, a young woman recovering from vitiligo. Dinara discovered she had vitiligo at at the age of 8 or 9, she remembers she was either in the second or the third grade. “I had already had big white spots all over my knees and elbows,” she explains.


“There was no medicine in Russia or Europe then. (There is still no treatment or institutions anywhere in the world but in some Asian countries). Doctors told us to simply put spray tan on the white areas.”


Nearly half of all people with vitiligo display symptoms before the age of 21, but the condition can develop at any age, diagnosable by a general practitioner normally after a physical examination like in Dinara’s case.


At the time of her diagnosis, the condition did not affect her life much at all. “I really didn’t feel anything. I was still a child and I didn’t know what vitiligo really meant for me. I remember my mom crying though.”


Perhaps her mother cried because as a medical worker she probably knew what little treatment existed for vitiligo in Moscow, Russia where Dinara is from, and in Europe as a whole.

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On the British National Health Service (NHS) website it says “The white patches caused by vitiligo are usually permanent, although there are treatment options to improve the appearance of your skin.” A common belief in many parts of the world and among many researchers and doctors. Although Dinara’s life proves the contraty, despite being told for many years that she needed to learn to live with her condition.


“There are a lot of big politicians and other public figures who still haven’t discovered vitiligo medicine that works. I really don’t understand how it’s possible and why it is not funded in the first world countries,”


“There was no medicine in Russia or Europe then. (There is still no treatment or institutions anywhere in the world but in some Asian countries). Doctors told us to simply put spray tan on the white areas. They told us not to waste time and to just accept the fact that my entire body would be covered in white spots. There were other doctors that charged a crazy amount of money and didn’t help in anyway. I remember going to this doctor once a week that gave me these round sugary meds that I had to take all day long… I stopped going to him after 6 months because there was not even a slight progress.”


Common treatment for vitiligo in the west as well as in other parts of the world is often quite ineffective and uncomfortable. Examples include topical therapy, psoralen phototherapy, depigmentation and micro pigmentation.


Topical therapy: Creams and ointments applied to the skin to re-pigment white patches. Like corticosteroids, but the treatment may cause dangerous side effects such as skin thinning, skin streaking, skin inflammation, acne, excess hair growth and visible blood vessels.


Psoralen Phototherapy: Also known as ultraviolet therapy. The therapy requires using the drug psoralen, which contains chemicals that react with ultraviolet light to darken the white patches on the skin. Some side effects of the treatment include sunburn, nausea and vomiting, itching and abnormal hair growth.


Depigmentation: A recommended treatment for people who have vitiligo on over 50 percent of their bodies. Therapy involves depigmenting the rest of the skin to match the white patches by applying a cream. Side effects maybe itchiness, inflammation, and increased sensitivity to sunlight.


Micro Pigmentation: A surgical instrument is used to implant pigment into the skin. Downsides are that the tattooed area does not darken in the sun when the rest of the skin does.


Other therapies comprise of counseling and support groups to help heal people emotionally and mentally.


As a young teenager Dinara began using a form of topical therapy that worked, more than 10 years later she is still vitiligo free.


“At the age of 13 my aunt started doing business with China and going there very often. Very quickly she found out that Vitiligo is well studied there and considered to be easily treatable. She brought me this medicine that I had to apply on the white areas once every day. The consistency and the smell of this medicine reminds me of vodka. I went through three of these bottles before maybe 95 percent of the white areas disappeared. I think the treatment took around a year.”

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“There are a lot of big politicians and other public figures who still haven’t discovered vitiligo medicine that works. I really don’t understand how it’s possible and why it is not funded in the first world countries,” she adds.


Research for vitiligo seems limited and conclusions are sometimes opposing. Some research shows that vitiligo has also been shown to cause lack of pigmentation in eyes and partial loss of hearing; however, other researchers agree that it is solely a skin condition. Dr. Pierre Hourst says, “Sometimes people have other conditions and then think they are all caused by vitiligo, but they are not; they have other conditions.”


Some say vitiligo does not itch others say it does. Dinara did not experience any other symptoms with the condition, not even the itchiness that some people seem to have. “No, it wasn’t itchy. It was like any other part of my skin just very white,” she says.


Some people develop a small number of white patches, but on some people the patches grow and spread throughout the body. Researchers are still unsure why these differences exist. One thing that is true for all people with vitiligo is that whatever white patches they do get will most likely be permanent. Another thing people with vitiligo share is that at one point or another in their lives, they have likely been on the receiving end of strange stares, judgment and/or name-calling because of their disease. People have shared testimonies of even being avoided because of having different skin, of people not wanting to sit next to them on the bus or touch them.


“I started feeling insecure around the age of 12,13. At that age vitiligo started taking bigger areas of my body. At that point it was on my knees, elbows, feet, fingers, above my left eye, and under my bottom lip. Kids and teachers started asking me questions like “Why did you put such a white eye-shadow?…and why only on one eye?” shared Dinara.


To be clear, vitiligo is in no way infectious, nor is it caused by infection. In certain rural regions around the world, the appearance of white patches on the skin is mistaken for leprosy, which is infectious, but is thankfully now treatable and curable. Sadly, in many cases, people with vitiligo are not mistaken for people with leprosy and are mocked or mistreated all the same, simply because they have a rare skin condition that makes them look a little different from the norm. As a result, many people with the disease suffer psychological consequences. Research has shown that people with vitiligo can experience anxiety, embarrassment, extreme self-consciousness and depression. A study published in the Sudanese Journal of Dermatology shows that 90 percent of patients were embarrassed by their white blotches. In certain communities, people with vitiligo are even discriminated against in the workplace, at school, and can suffer romantic rejection due to their condition.


Most people suffering from the disease choose to conceal their white patches using makeup because of the social stigma sometimes attached to the condition. By opening our minds and laying judgments to rest, perhaps we can also help people suffering from this rare skin condition to lay their insecurities and anxieties to rest. That way, we can all lay our heads down for a good night’s sleep.