19 November 2012

Uganda: No One Expected Me to Live Beyond 12 Years

While growing up, most people thought Prossy Nabirye would die early because she suffered from sickle cell anaemia.

Even as a grownup, her parents never wanted her to get married, but now they cannot believe how her story has turned, write Stella Naigino and Violet Nabatanzi

Prossy Nabirye was born with sickle cell anaemia. She was the only affected child in a family of eight. When she was diagnosed at nine months, her parents were deeply affected by the news.

They always looked at her with pity because everyone thought she would die any time, considering how often she suffered attacks. They gave Nabirye special attention; the best they could offer a child who could leave this world any time.

"I always stayed home and never went to good schools like my siblings," Nabirye says.

Her mother, Ruth Nakasumba, always worried about her. She had a feeling that even if her daughter did not die during her childhood, she would never be able to do anything for herself as an adult. For this reason, Nabirye's parents registered several of their properties in Nabirye's names in a bid to provide some security for her in the future, in case she survived.

Fear of death

But while she was treated differently at home, at school she suffered stigma.

"My worst moment was when I was eight years in P2. The head girl of our school confronted me and told me that I was going to die at the age of 12," Nabirye reveals.

She says that incident traumatised her for the next four years as she waited to see whether she would die or not.

When she turned 12, her family celebrated her birthday, but for Nabirye, it felt like they were celebrating her death.

"After my birthday party, I dressed in my best clothes, slept on my bed and miserably waited to die," she recalls.

Her family members noticed her misery and tried to cheer her up but in vain. She feared to disclose why she was acting funny. After a lot of pleading, she told her mother who burst into tears. This worsened Nabirye's misery and she believed it was true she was going to die.

"After some time, my mother tried to counsel me, but she could not divert me from thinking that I would die. She had also been convinced by the community around that I would not live for long," Nabirye says.

"She tried taking me to traditional healers who people used to say had medicine to cure sickle cells. I remember being given a polythene bag full of soil to lick as medicine that could cure the disease. But as I was growing, I realised I had to stop listening to what people said about me," she says.

Fear of marriage

"My mother had been told that I should not marry because if I had sexual intercourse I would die," Nabirye says.

She adds that she had learnt to ignore what people said about her condition. As she grew older, her worried mother never wanted to hear that Nabirye was in a relationship. When she got a partner and informed her parents that she wanted to get married, they warned her never to talk about it again. She went ahead and organised for her husband-to-be to visit, but her parents were not supportive at all.

When Nabirye's mother met her fiancé, she tried to discourage him from marrying her, thinking that he did not know she was a sickler. To her mother's surprise, he was fully aware of his future wife's condition and was willing to take care of her.

The introduction and wedding ceremonies shocked the whole village.

Now she is married to Tony Owalu and they have two children, Precious Ajalo, seven, and five-year-old Kevin Ariko, who are sickle cell carriers, but not sicklers.

Ironically, Nabirye's sisters and brothers are not married, neither do they have children.

Now 34 years old, Nabirye says the stigma she went through as a girl gave her courage to help others like her. She has joined the Sickle Cell Association in Uganda where she is a counsellor.

Awareness key in fighting disease

According to Prof. Christopher Ndugwa, the head of the Sickle Cell Clinic at Mulago Hospital, sickle cell anaemia is a blood disorder that affects haemoglobin, the protein found in the red blood cells that help carry oxygen throughout the body.

It occurs when a person inherits two abnormal genes (one from each parent) that cause their red blood cells to change into the shape of a sickle (half-moon like shape).

"It attacks different people in different ways, but doing medical follow-ups is the best way to control the attacks," explains Ndugwa.

He says sometimes it causes swelling of the whole body and at times it is only the hands that swell, causing the patient a lot of pain.

"When the red blood cells clump together, they do not carry out their work well and this is where the crisis begins," Florence Alupo, the nurse in charge of the Sickle Cell Clinic at Mulago Hospital, explains.

She says the attacks include repeated anaemia attacks, among other illnesses. Alupo advises sicklers to take a lot of fluids and also do everything to avoid diseases like malaria, which can be prevented by sleeping under a mosquito net.

Proper knowledge of the disease is essential for the parent and the child with sickle cell disease.

"Parents should speak to their children about their health status, so that the children are aware and they do not hear it from someone else," Alupo advises.

"Disclosure is a bit hard, but a medical worker who treats your child can help," Alupo notes.

This way, it is easier to counsel and strengthen the child as well as teach them what to do to avoid attacks. They should always be informed of what to do in case of attacks.

Ndugwa adds that parents should learn not to mistreat children with chronic disease as this causes more suffering.

"Some parents think that having children with diseases like sickle cell, asthma and others is a misfortune, but such victims can be treated," Ndugwa notes.

"Some parents are terrified on realising that their children are sicklers, but worrying cannot solve anything. Rather, people should be strong and encourage the patients as well," she says.

She also warns against discrimination.

"Treat them like you treat others; give them good education and all the good things you give to other children," Ndugwa advises.

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