“Vitiligo” A disease that degrades personality, and destroys the natural image

Adela Madyane- Kigoma

“Vitiligo” is a disease that causes the loss of skin colour in blotches. It occurs when pigment-producing cells die or stop functioning. A loss of skin color can affect any part of the body, including the mouth, hair, and eyes. It may be more noticeable in people with darker skin.

At the age of nine years, Stephania Ntahobali being in standard two found out she had a vitiligo disease having affected on arms and stomach.

At first, she didn’t know what it was she thought the white pick cell on her skin will fade away but instead, they kept covering a large part of her body

Children at school started laughing at her saying that she was a wizard and she has eaten human being flesh as a result of the white spot on her skin color, she started feeling uncomforted while at school.

Ntahobali would never tolerate the insult as she decided to drop out of school regardless of the efforts made by her brothers to secure her disease.

“My family had lots of questions to ask what had happened to me, what I have eaten or where have I been to get such scary skin, for I was the only one in my family with such disease, my father abandoned me from going to school saying that it makes him feel shame to have a baby with such skin,” said Ntahobali.

Unlike her father, her mother and her brothers accepted her with the skin changes that happened, they didn’t care what she looked like, they started looking for medication to make sure she was alright visiting the different hospitals in Maweni and Bugando, and the use of local hubs though it never worked

“My condition got worse when I started menstruating, and even worse when I used medicine, all my stomach got white spots like a person with albinism, I started feeling like am a different person, I lost the ability to have my moments with my friends and community as well, I became desperate,” She said in tears

“I start to cry and tell myself horrible things like I’m ugly, what did I do to deserve this,” and “I’m a horrible person.” I know my family loves me for me, but sometimes it doesn’t feel like enough. Now that I’m entering my teen years, I’ve started to care more about my self-appearance and self-esteem. I don’t feel pretty with my spots. Sometimes I wish I could go back to my younger self” She said

After several attempts at medication with no good hope she decided to get married to a man whose age was above hers for about 30 years just because she could never get a man of her age due to society’s stereotype towards her disease, the man took her away from her Mkongoro village to Kibirizi in Kigoma Municipal

“ My mother advised me to get married to an older man hoping he would love me the way I am and take good care of me, I thank God it had happened the way my mother wished and I am a mother of seven children to my old man though the disease widely spread to all parts of the body as I conceived and deliver children,” said Ntahobali

Speaking about what society feels towards her she said it has never changed, most people look at her like a scary person, some still think she is a wizard and others try to ask why she looks different from others and she can only laugh

“ I thank God, I went through a lot but I still have gusted to survive, though many people try to abandon me some respect what I’am, they have given leadership position both in the society and in church, I no longer feel horrible of myself, I learned to stand with my condition no matter what,” Said with hope

Ntahobali is now 64 and she still has her energy for the disease does not affect any of her energy rather her whole body is now white except for to face, but the good thing is that the disease has not affected her eyes

She mentions the most challenges be oil, her skin becomes dry every time and then, she cannot apply other oil or lotion because they burn her and get her with rashes, and the skin becomes red

“In the process of treatment, I join the albinism institution where they support me with albinism oil, it costs a lot, I get twice a year, it’s not enough instead I use honey for my skin but if I am to get that oil will be of much help to my skin,” She said

Ntahobali’s work is to sell fruits within the society, her husband is currently sick he can not move, and her life is not well to support her sick husband, herself, and her children, and ask the society to support her in the oils to apply over her skin

She came to learn that due to the low prevalence of vitiligo disease, medical expertise is rare and knowledge is scary both to doctors and community members as well this is why the community tries to punish them by segregating themselves thinking they might be contaminated

In the Kigoma region, Ntahobali is not alone with the such look, they are now two, though the second one is from Shinyanga who escaped death from her family members, especially the husband to Kigoma

Prisca Ng’abe got the disease while in a marriage having two children at the age of 30, where the disease started as a spot mark on her mouth and then spread to other parts of the body

she started curing the mark in different hospitals both within and outside Tanzania, instead of getting a cure for the disease prolonged, she could never understand as she emerged to have diabetes diseases which made her stay in Bugando hospital for almost four years and after that vitiligo had eaten her widely

On her return, many parts of her body were affected, and that is when she became the topic of the village where she was living with her husband (the village not mentioned for her safety), she also lost her business because people could never buy anything from her shop thinking she is being cursed by God.

Nga’abe’s husband stood nearby the house and chased her out saying that she is a scary person and no one would want to see her anymore in that village, she would go in her way for she is a cursed person

“ I found my husband with another woman, he said her woman is afraid of me like I will do something bad to her with my disease, he took the children with him and order me to leave or else he would kill me or find people to kill me if I persist,” She said

The torture never ended for her husband, it spread throughout the community and they planned to kill her to avoid the disease transmission thinking it is a communicable disease that is why she escaped to Kigoma without knowing how she could start living

“ My first child who was always by my side died, I had no one to put my shoulder to cry on, I thought I would die, but I had to know more of what happened to me, some think I am wizard, others think I was burnt, bad enough majority treat me like I am not normal human being, it hurts” Said Ng’abe

Speaking to the guardian who supported Ng’abe Dafroza Sadock said she found her crying along the road in the middle of the night, though scaring she decided to take her to her house

“ When at home I found this woman as different from us, her mouth was reddish, her skin was too dry, I couldn’t understand her, I asked her but she could not answer she was only crying” Said Sadock

It took a while for Sadock to accept her, she never had food or drinks with her, she never had her on her bed or touched her cloth thinking she would spread her disease to her too, she only had conscious to help her but she was afraid of the result.

After sometimes and long discussion she found out what she was suffering from and decided to give her the area to look for money so she can’t survive without money.

“ I opened a shop to her though she forgets now and then, she cries over and over, I rented her a single room so she can be independent, the only challenge is oil and soap for she uses vaseline 500mils for only three days to make her skin survive, it costs a lot said Safock

Magdalena Mushi a non-communicable disease coordinator at Maweni referral regional hospital said vitiligo is a long-term condition where pale white patches develop on the skin, It’s caused by the lack of melanin, which is the pigment in the skin and it is not transmitted disease

She said vitiligo may occur at all ages but usually begins between the ages of 2 and 40 and that it has affected 1-2 percent of the population worldwide

Mushi added there is no direct cause of vitiligo but there are many theories which include generic disorders and immune systems disease

“ There are other diseases like thyroid and diabetes which lead to emerging of vitiligo,” said Mushi

Patients with vitiligo are highly affected by their psycho-social and emotional due to changes in body appearance so to help this person from self and society stigmatization they must be educated more on the disease for self-awareness and acceptance said the coordinator

She said there are medical treatments a person can get especially at the early stage of disease so the most important thing is to visit hospitals upon signs

The doctor adds that the patient can also be treated by the use of ultraviolet light in the morning before 10:00 AM but staying under the sun for 7 minutes for exceedingly a person can get skin burn problem, they are also given sunburn protective to prevent the sun from hurting them

The side of psychologist and counselor Togolani Selemani from Maweni hospital said they receive 2-4 per month rare disease person in the hospital

He said some of them go to the hospital while they are in the depression stage due to failure to accept what they have resulted into and because of the stigma from the society

“These diseases are not recognized within the society, only few can get the disease, the community threats them, this affects their brain which may result into suicide, neglecting, school drop out and many associated diseases,” said Seleman

He said hospitals treat each patient according to the stage of the disease while many of them are only treated psychologically by counseling.

Seleman ask the community to not finger point out these people instead they have to love them, respect them and help them undergo medication for it a disease anyone can get at any stage of life, they must not be segregated for vitiligo is a non-communicable disease and can be healed once a person attends to the hospital before it is too late