Children can be cruel and once they discover that you are different you will not hear the end of it. The endless teasing, the alienation, tear-inducing incidents and some will even sing about you.
Ironically, this was not the time Joyce Wanjiru Kimunyai who suffers from a condition called Vitiligo suffered the worst humiliating and draining moments. She was born a bouncing, normal, healthy baby, the pride of her parents until the age of six years when everything changed.
She suddenly realized that her skin was changing and it now entailed patchy areas that were changing in color.
Vitiligo (vit-ih-LIE-go) is a disease that causes the loss of skin color in blotches. The extent and rate of color loss from vitiligo is unpredictable. It can affect the skin on any part of your body. It may also affect hair and the inside of the mouth.
“I was still in my early childhood at around 6 years, actually, it was not a bother since I was still young and I had not discovered myself,” Joyce told Afromum.com in an interview.
This was to, however, change when she became a teenager and started noticing the difference between her skin and those of the other students.
“To be honest it affected my self-esteem negatively but after a lot of self-denial, I had to accept myself for who I am but it was not very easy,” she said.
As she talks we can agree that it might not have been easy because everyone used to treat her differently. She says people used to bother her so much, especially when they stared at her and asked questions as others murmured around. Then there are those that totally refused to shake her hands thinking that the condition was contagious.
Although she is no longer a teenager, the 23-year-old teacher says not much has changed in her interaction with people.
“ I remember there was a day I went for an interview and the employer didn’t even bother to review my CV because of my condition that was a big blow for me,” she narrated sadly of her predicament.
It is not all gloom for her because there are those who actually give her a chance and after the initial interaction they realize that she is a normal person and that her condition is not contagious.
“ They don’t fear to have me as their friend they do appreciate how I look. The condition has also not affected my dating life, in fact at first they believe its burns afterward they come to know about the condition and they are always comfortable with it,” said Joyce
Apart from having to deal with Vitiligo and alienation, there is also the issue of cost. Treating vitiligo is very costly, and Joyce says her parents used to take her to different hospitals but as the condition continued to spread, it drained their pockets.
“I just reached a point where I decided to tell them am comfortable with the condition not to worry so much, that I have come to accept myself. I was under medication for almost 10years, I used to be given tablets, injections and cream to apply but all was in vain. I stopped using all forms of medication and of now am not under any medication,” said Joyce.
Since she decided to accept herself, things have certainly become easier and she does not have to content with a cocktail of drugs to contain it.
Unknown to most people, there is a community of people who are living with the Vitiligo condition in Kenya and so far there is no formal recognition of their existence. They have no form of help especially with issues such as drugs which are too expensive for some to afford.
There is also the issue of supplies such as sunscreen which helps to manage the condition.
During the interview, Joyce had a message of the government where she wanted the government to consider vitiligo as a form of disability just like albinism, and to distribute sunscreen all over Kenya.
To the public, she wanted to say that, vitiligo is a patchy loss of skin pigmentation, and not contagious. The public they should not fear them and instead show them, love.
Joyce also spoke passionately against discrimination as they are just like other humans with only the difference being the skin. She also wanted the employers to stop judging them based on their skin color.
She added, “We are very creative and capable of doing things just like other people, they are supposed to give us a chance to showcase what we have before judging us because it really hurts when someone refuses to employ you just because of your looks…. Lets spread awareness and love one other.”
At the moment, the community has formed a Whatsapp support group where they encourage each other in bad times and to follow their dreams.
Quick facts about Vitiligo
• Vitiligo (vit-ih-LIE-go) affects the skin where this important organ loses color in blotches.
• The rate and extent of loss of the skin pigmentation is unpredictable and can affect any part of the body. The hair and the inside of the mouth are not spared as well.
• It occurs when the cells that produce melanin die or stop functioning. Vitiligo affects people of all skin types, but it may be more noticeable in people with darker skin.
• The condition is not life-threatening or contagious. It can be stressful or make you feel bad about yourself.
• Treatment for vitiligo may restore color to the affected skin. But it does not prevent continued loss of skin color or a recurrence.
Vitiligo signs include:
• The main sign of vitiligo is a patchy loss of skin color. Usually, the discoloration first shows on sun-exposed areas, such as the hands, feet, arms, face, and lips.
• Patchy loss of skin color
• Premature whitening or graying of the hair on your scalp, eyelashes, eyebrows or beard
• Loss of color in the tissues that line the inside of your mouth and nose (mucous membranes)
• Loss of or change in color of the inner layer of the eyeball (retina)
Vitiligo can start at any age but often appears before age 20.
When to see a doctor
You should see a doctor if areas of your skin, hair or eyes lose coloring. Vitiligo has no cure. However, treatment may help to stop or slow the discoloring process and return some color to your skin.
Depending on the type of vitiligo you have, the discolored patches may cover:
• Many parts of your body. With this most common type, called generalized vitiligo, the discolored patches often progress similarly on corresponding body parts (symmetrically).
• Only one side or part of your body. This type, called segmental vitiligo, tends to occur at a younger age, progress for a year or two, then stop.
• One or only a few areas of your body. This type is called localized (focal) vitiligo.
It’s difficult to predict how your disease will progress. Sometimes the patches stop forming without treatment. In most cases, pigment loss spreads and eventually involves most of your skin. Rarely, the skin gets its color back.
Vitiligo occurs when pigment-producing cells (melanocytes) die or stop producing melanin — the pigment that gives your skin, hair and eyes color. The involved patches of skin become lighter or white. It is still unknown why the cells fail or die. It may be related to:
• A disorder in which your immune system attacks and destroys the melanocytes in the skin
• Family history (heredity)
• A trigger event, such as sunburn, stress or exposure to industrial chemicals
People with vitiligo may be at increased risk of:
• Social or psychological distress
• Sunburn and skin cancer
• Eye problems, such as inflammation of the iris (iritis)
• Hearing loss
Some of the therapies that can work for someone living with the Vitiligo condition include a combination of psoralen and light therapy and removing the remaining color (depigmentation). Surgery is also another option if the other interventions don’t work or if there is need to use it with the other therapies as well. Surgery may involve skin grafting, Blister grafting, and tattooing.