One woman’s struggle with albinism

Fiida Dianah Nabirye, 27, struggles to keep her eyes open as she holds onto her daughters under the hot afternoon sun.
Holding her daughters on either side, she flashes a wide smile revealing some of her missing front teeth.
Hers is the story of a woman who has been victimised by society given her different skin complexion.
At the age of 10, she had to abandon school in Primary Five after being bullied continuously by her colleagues in class.
Apart from the bullying, her father abandoned the family of eight when Nabirye was only 10 years.

Her father, she says reasoned that Nabirye’s birth was a ‘bad omen’ that he could not stomach thus abandoning the family home in Ntaala village, Kidera Sub-county in Buyende District.
According to her mother Tofirista Tigairya, Fiida lived a fragile childhood, which was bothering but exciting.
“Her sisters would call her “mzungu”. She had these beautiful blue eyes that were different from others. Little did they know that their sister was an albino,” she says.

This was the beginning of challenges but even amid this, Tigairya kept on hoping and gave her child the best care even when others referred to her as a curse.
At four years, Nabirye, like any other child, started school which ordinarily introduced her to a new environment that came with other challenges such as bullying from fellow pupils and calling her derogatory names.

Feeling excluded
This made her feel excluded and unloved, forcing her to abandoned the school in Primary Five.
“I cried all the time and always wondered why I was so different from others. Wherever I went, I would be called Namagoye (albino) and every time I would ask my mother why I was a Namagoye, she would instead cry. That disturbed me a lot,” she says.

Beyond this, she says, her biggest challenge has been one that she has had to contend with since she was a child.
“Getting special creams for my skin has been a challenge because the creams even when available, are very expensive,” she says.
Nabirye has trouble with dust and the sun as well as injuries because of the delicate nature of her skin.

“A slight scratch can burst into a serious wound that takes long to heal. I have to be careful all the time,” Fiida says.
Now at 27 years, Nabirye has already lost much of her teeth, which she attributes to albinism.
“There are things I cannot eat such as sugarcane much as I like it. It is hard for my gums. I can only eat soft fruits such as jackfruit. I cannot eat guava. If it is a mango, I have to cut it into small pieces and eat only the flesh,” she says.

This has relegated her to soft foods such as millet or cassava bread, sweet potatoes and her favourite meal - matooke although she rarely eats it since matooke are either scarce or expensive in the Busoga sub-region.
The main food available in the region is cassava, which she finds difficult to eat because it is usually hard.
However, beyond that Nabirye finds it hard to dig yet she has two daughters that she has to fend for.
“I have to grow food for them but this is where I get most of the injuries, which turn out to be troublesome. Besides, my skin gets affected by the sun,” she says.

Relationships
Nabirye’s has also had a bad experience with relationships because most men, she says, want to sleep with her to benefit from the assumed magic but never want to be seen with her.
“Men think there is magic in us (albinos) which is not true. We are like any other woman. But they will only come in the cover of darkness. They do not want the world to know,” she says.
For instance, it was a hallowing experience for her and the children as the father of her children, until his death had refused to identify with them.
“The good thing he had told his brother and sister. Everyone was surprised to know that he was the father of my children at his funeral,” she says.

View from experts

According to Hannington Byarugaba, a doctor at City Medicals, Bukoto, albinism is a genetic disorder that distorts the distribution of melanin, a pigment that determines ones skin colour.
“Albinism presents itself as a deficiency. Therefore, the defective gene in one or both parents is passed down to a child leading to albinism,” he says.

Albinism, he says, is common among the black race because they have a higher deposit of melanin compared to Caucasian or oriental races.
The condition makes some people react negatively to hot conditions, which he says, makes them need special creams to adopt.
Albinism also makes victims susceptible to injuries that might turn septic or take long to heal.

According to Barnabas Atwiine from Mulago Cancer Institute, such people also are prone to cancer of the skin thus they must always limit their exposure to sun rays. Beyond this, is the issue of mysterious cultural beliefs which according to Joyce Lambuli, makes some men believe that they will get blessings when they sleep with an albino.
“This is completely false. Men who are looking for wealth and prosperity must work hard instead of looking for it through sex,” she says.
Nabirye, currently lives as a single mother of two daughters: Nine-year-old Angela Kwaggala, and Gorette Nabirye.

WHAT THEY SAY

“She is a go-getter. She does not see her disability as a limiting factor. In fact, she has become a mobiliser who convinces others to believe in them themselves,” Jeniffer Namukose, Nabirye’s friend

“She is friendly and helpful. She does not fear to speak out and speaks with everyone in this village,” Eron Namwebya, Nabirye’s neighbour

“I have known her since she was a small girl. She is a friend to everyone,” Joy Nabirye, childhood friend

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