They say there’s a kind of beauty in imperfection. For women like 28-year-old Julie Nasuju, the journey to find beauty in her imperfections has been nothing short of heartbreaking.
Nasuju was diagnosed with vitiligo at two years old.
The condition manifested itself as a spot in her genital area when she was one and a half years old. Her mother’s initial reaction was to chase away several house helps thinking that they left her diaper on for too long.
When the spot wouldn’t go away, it is then that her visits to several hospitals began until she was diagnosed with vitiligo. Vitligo is a skin condition that affects the pigmentation of the skin.
“I was given medication which included a cream that I was supposed to apply daily. In addition to this, I was also supposed to go in for one hour radiation sessions” she says. She attended the radiation sessions for nine years before the side effects took a toll on her and she had to stop. The doctors said the UV light under which she was being placed would eventually affect her eye. In addition to constant headaches she got after the sessions, it was also too costly for her mother.
BULLIED IN PRIMARY SCHOOL
Primary school years were the hardest for her. She was bullied by her peers to the point of attempting to commit suicide. Some of her friends advised her to wear a veil to hide her patches. It was easy to pick on her due to her low self-esteem with some of her school mates calling her names such as ‘madoadoa’,’combat’ and so on. Others pulled pranks on her like putting pins on her seat and pouring porridge in her desk just to disorient her. Due to this, she mostly kept to herself and found it hard to socialise. Things would not get any easier in high school when she joined Ndumberi Girls High school. But she devised a plan to deal with bullies.
“I told them the condition was contagious, so I wasn’t ‘monolised’ in form one and neither was my stuff stolen,” she laughs.
The 28-year-old who is now a mother of three has patterned skin around her eyes, down her nose area and around her mouth, but she couldn’t more confident.
“I’m different with every year. I have a different patch in a different part of the body every time. That’s the beauty of this condition,” she says.
After high school Nasuju, was not able to attend college due to financial constraints. Finding a job also proved difficult. .She was turned away by most employers due to her appearance with some saying she might scare off the customers.
She immersed herself into arts and started dancing. She found that the entertainment and events front was more accommodating than any other field.
Nasuju, who is now a DJ and a model, uses these platforms to sensitise others about the condition.
Several myths surround the condition. The biggest misconception according to Nasuju is that the condition is contagious. The condition is also confused with albinism. When she had her first child, her boyfriend was pressurised by his parents to walk out on her .They wanted him to find another girl to marry who was “normal”.
“His parents rejected me, they said I was not good enough for their son” she remembers.MORE PRONE TO SUNBURNS
Although the condition does not cause any discomfort to the skin, people with vitiligo are more prone to sunburns and are at a higher risk of getting skin cancer if exposed for too long to the sun.
Her youngest daughter has started showing signs of having the condition too. However, Nasuju says she is in no hurry to seek medical attention.
“No medical cure has been found for the condition. And in some cases, it disappears with time. I’m not going to subject her to treatments this early as they might worsen the condition as they did for me. The idea is to monitor how the condition will manifest itself before taking any action.”
Nasuju has three children from past relationships. All her children are aware of their mother’s condition as she has always talked about it with them.
Her last partner, however, was not as accommodating, just as the first one. After several years of living together and bearing a child out of the relationship, the boyfriend turned cold and started abusing her physically. He alluded to the fact that he didn’t want his children to have madoadoa despite their daughter being born free of the condition. Nasuju walked away and went back to her mother’s house.
At her mother’s house, she pondered over why people rejected her repeatedly .Having been raised by a step dad, she thought if she found her biological father, he would have some answers for her. She sought the services of a private investigator, and within a short while she was reconnected with her father. Nothing would have prepared her for what happened next.
“I went to meet with my father at Gigiri, UNEP offices where he worked. He decided to do a DNA test to ascertain if indeed I was his daughter. A few days later we met and he said the results showed I was not his daughter but he was willing to support me if I agreed to be his lover. I was shocked. I asked for the results but he refused to show them to me.”
Back home, she confronted her mother, who assured her that that man was indeed her biological father. The incident with her father built her confidence in a way she didn’t expect. She wanted to prove to him that she was a perfect child and would make it in life with or without his support. She sought others with the same condition and together, they would share experiences of rejection. During this time, she discovered there were others who were locked up in their houses by their family members. She felt stronger and encouraged and ready to fight for others like her. Her journey of self-acceptance had begun.
Nasuju dreams of opening up a research and advocacy centre that will bridge the gap between employers and persons living with the condition. In addition to looking for opportunities, she hopes to create awareness by opening up avenues that would encourage conversations around the condition.
She also hopes to use platforms she is currently working with to address pertinent issues such as affordable sunscreen. A person with vitiligo cannot stay under direct sunlight for more than 20 minutes without protection of either protection gear (caps, sunglasses, scarfs) or sunscreen.
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According to the Vitiligo Society of Kenya, Vitiligo is a disease in which the pigment cells of the skin, melanocytes, are destroyed in certain areas. Vitiligo results in depigmented, or white patches of skin in any location on the body. Vitiligo can be focal and localised to one area, or it may affect several different areas on the body.
The exact cause of vitiligo is unknown, although most experts believe that it is an autoimmune condition in which the body’s immune system mistakenly attacks and destroys certain cells within the body. Most people who have vitiligo will develop the condition prior to age 40; about half develop it before age 20. Vitiligo tends to run in families.
Vitiligo also tends to occur more often with certain other autoimmune diseases, such as hyper- or hypo-thyroidism (an over- or under-active thyroid gland), adrenocortical insufficiency (underproduction of corticosteroid hormone by the adrenal gland), rheumatoid arthritis, adult-onset type 1 diabetes, psoriasis, systemic lupus erythematosus, and pernicious anaemia (subnormal red blood cell level caused by inability to absorb vitamin B12). This suggests that these different autoimmune diseases probably share at least some predisposing genetic or environmental causal factors, although these mostly remain unknown.
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