Nsofwa: Vision lost but lives positively

NSOFWA Sampa (centre) with other Mandela Washington Fellowship fellows in the USA.

WHEN she stopped taking anti-retroviral drugs (ARV), Nsofwa Sampa, 26, had no idea she would be on the brink of death and lose her senses of sight and hearing.

She made this irrational move because she could not stand the stigma and discrimination in a boarding school when other pupils discovered that she was on ARVS.
Today, Nsofwa may be blind and partially deaf, but she has decided that she will not allow her HIV status to depress her ever again.
Nsofwa was born HIV-positive but her parents never told her about her status before they both died.
Now a trained clinical and psychosocial counsellor, she has been helping other HIV-positive people to accept their statuses and live positively.
Nsofwa started taking ARVs at age 11 after her mother died.
After a month of taking ARVs, she stumbled on her medical record and was stunned to learn that she was HIV-positive.
“Before that, I couldn’t understand why I was taking medicines when other children at my uncle’s place were not. When I read my medical details about my infection, I never wanted to hear anything about HIV and AIDS,” Nsofwa said.
Sometimes Nsofwa would not take the ARVs because her cousins weren’t taking any medicine.
Her educational journey started at Mary Queen of Peace School where she completed primary education. In 2006 when she qualified to Grade Eight, she was sent to a boarding school (name withheld) where her fellow pupils would make her life difficult for being HIV-positive.
She regretted going into boarding school because things got so bad that other pupils would refuse to share a dormitory with her.
“In boarding school, one of my friends discovered that I was taking ARVs. I was so shocked, I got upset and I threw my drugs away. For a good two months, I never took my drugs,” Nsofwa recalls.
The news of her HIV status would then spread to the whole school and Nsofwa found herself sleeping alone in a dormitory.
She did not know how to handle stigma in school because no one had ever counselled her regarding her HIV status.
“After I stopped taking my drugs, I became ill and when I resumed my medication, I had to take second line HIV treatment. I was very sick and in a coma for three days,” she shared.
At that point, Nsofwa started experiencing opportunistic infections. Pneumonia and meningitis came in, resulting into her loss of sight and hearing sense in one ear. The day was November 25, 2009 when she became blind.
When she recovered, her aunt took her to a day school and engaged HIV and AIDS activist and doctor Mannaseh Phiri to counsel her.
During counselling, Dr Phiri explained to Nsofwa that she contracted HIV from her mother and in an instant, this brought healing to her soul.
“That’s when I figured out what could have killed my mother. Had I known earlier that I got it (HIV) from mum, I would not have been in denial,” she said.
Dr Phiri also encouraged Nsofwa’s family to openly discuss health issues with her. Eventually, she accepted her status and began to talk about it openly.
Nsofwa was later enrolled at Munali School for the Deaf and Blind where she completed grade 12 in 2011.
At Munali, she learned how to use braille. Braille is a tactile writing system used by visually impaired persons. It is traditionally written on embossed paper.
“While at Munali I had to make many adjusts. I could not read braille, so I had to learn braille. I came to terms with my being blind and all things worked well,” she narrated.
Nsofwa said her loss of sight proved to be a turning point in her life. She learnt to look beyond her predicament and embark on HIV / AIDS activism.
That is how she started sharing the story of her life with other people.
“It was at that point that I told my family that there was more to life than being sighted, and from that time, I started talking openly about HIV even on radio,” Nsofwa said.
After completing secondary, she studied clinical and psychosocial counselling at Chainama College of Health Sciences.
Last year, Nsofwa earned a place on the Mandela Washington Fellowship and travelled to the United States of America where she underwent training on civic leadership.
The previous year, she had worked on a project dubbed “Test and treat” under the Centre for Infectious Disease Research in Zambia (CIDRZ).
“Now I am happy, I would rather be blind and fight this small virus,” she said.
Nsofwa, who is writing a book titled “A sight lost, a vision gained”, is urging parents to discuss health issues with their children.
She said had she been told that she was HIV-positive, she would not have experienced so much unhappiness in childhood.
“I would have enjoyed life the way I enjoy it now, if I had known much earlier. We need to talk as families, even before our doctors come to talk to us about our conditions,” Nsofwa said.

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