By MIRIAM ZIMBA –
SHE was compelled to take medication everyday from a tender age, but nobody ever bothered to explain why.
Her quest to find out why her guardians always reminded her on the importance of her daily medication has seen Nsofwa Sampa pass through unbearable pain and suffering but not enough to discourage her.
She was subjected to take anti-retro viral therapy (ART) from the tender age of three years.
“Every time I asked why I was the only one in the house who had to take medication every day, my uncle who was obviously at pains to explain to me, would just emphasise the need for me to ensure that I took the medicine everyday without fail,” she recounts.
Sampa, who is now 22 years old, never felt the need to find out why, but as she grew older, questions as regards her daily medication began to dawn on her, but not enough for her to rebel against her uncle’s instructions.
This is probably because following the demise of her father and mother in 1994, and 2002 respectively, her uncle and his household became the only family Nsofwa had.
She found out about her HIV status in 2003, when her uncle who had accompanied her to the health center for routine medical examinations had to step out for a while, leaving her on the queue to the doctor’s office.
“My uncle had to rush out for a while, but promised to return before I was called into the doctor’s office,” she recounts.
Because she was old enough to read, and the curiosity compelled her to read through her medical file.
“I came across a page that had a letter of transfer from my previous clinic to the current one.
It was then that I discovered the letter’s contents which stated that I had been diagnosed with HIV at the age of three years!” she explained.
“I was so shocked and began to wonder if I was really HIV positive, but because I did not know how to handle the matter, I did not bother to ask.
After this, she became very cautious when taking her medicine, and she did not condone anyone talking about the need for her to take the medication.
“I did not want anyone to remind me, and at times I would forget, and when I am reminded, I would get very offended.
Not too long after that, Samps’s uncle realised from her reactions that she had known her status, but non of them was willing to talk about it.
When she moved to her aunt’s place in 2007, she was enrolled in boarding school where she joined the Anti-AIDS club, and learnt more about HIV transmission and prevention.
“At the time, the impression I had about HIV was that a person could only become infected if they are promiscuous or through the sharing of blades and other sharp objects,” she says.
“I never thought that HIV could be transmitted from mother to child,” she adds.
It continued to dawn on her mind each time she read through the medicine leaflet, but adherence was not a problem at the time, as she was slowly accepting her condition.
However, things took a different twist when one day one of her peers at school found her taking the drugs and asked, ‘ are those ARV’s you are taking?’
This completely shattered Sampa, who could not handle the fact that someone else had found out!
“I just remember getting very upset and went and threw away my medicine because I did not expect anyone to know what ARV’s were because I equated HIV to a curse,” Sampa says.
For two months, she did not take her medication, she developed drug resistance, and her CD4 count drastically dropped, and she was immediately placed on the second line ART regimen.
She began this second line treatment but with a pinch of salt, she was still not willing to play along because of self stigma.
“I did not condone any talks about HIV, and at the time, I had made up my mind to die because I knew there was no cure for HIV,” she recounted.
Having noticed her low self esteem and struggles to battle with self stigma, her Aunt sought consultations from HIV specialist-Mannasseh Phiri, who offered to counsel Sampa twice a week at her school.
Dr Phiri introduced Sampa to other adolescents who were living with HIV, and this gave her some form of solace, because she realised that others had endured worse than she did.
“When I heard what others had gone through, I gained some encouragement, although at the time, she was still fighting the battle within her inner self on adherence to medication.
At this point, Sampa was ready to discuss anything else except HIV.
In 2009, Nsofwa suffered a bout of tuberculosis (TB) but because the virus was widespread in her body, her response to the TB treatment was very slow.
She soon developed many opportunistic infections such as body rash, ring worms, and she fell victim of advice from a lot of peers who advised her to try so many unconventional remedies.
In the same year, her health continued failing, and she even began to miss classes and she developed chronic headaches that resulted in many hospitalizations.
“Later in the year, I collapsed and I was in coma for some time,” she recounts.
When she finally stabilised after being rushed to hospital, Sampa suffered temporary memory loss and she developed sharp pains in her rib cage and that prompted the doctors to place her on pneumonia treatment for 14 days.
However, the treatment did not respond well because the following month, she still had fever and at the time she was taken back to the hospital, and was later diagnosed with cryptococcal meningitis.
Shortly after this, Sampa began to gradually lose sight, and audibility!
However, with medication over a period of time, her left ear began to recognise sound and she was eventually able to hear, but her right ear has remained permanently inaudible.
As though this was not tormenting enough for a 17-year-old child, she completely lost her sight five days later on November 25, 2009.
“I remember being with one of my cousins who was seated on my right hand-side, and I noticed that I could not see anything, and realised I had gone blind,” she explains.
Because of ill health, Sampa spent Christmas 2009 in hospital and her aunt and Dr Phiri continued their relentless efforts of counselling her.
The loss of sight and partial audibility did not impair Sampa’s dream to continue with her education.
Her desire to continue with her education compelled her Aunt to secure a school place for her at Munali High School, which offers special education for the visually impaired.
She learned Braille in four months from one of the associations for the visually impaired.
Today, even when people would tell her they wished God would restore her sight, she reminds them that she is more grateful to God for keeping her alive thus far.
As regards the loss of her sight, Sampa is consoled by the fact that she is fighting a bigger battle-HIV, and for her the loss of sight is something she knows she can live with.
“I am more concerned about the HIV in my body than the loss of sight,” she says.
After completing her secondary school education, Sampa was again confronted with another challenge, her career choice.
At the time, she was told the only career choices available for the visually impaired were that of teaching or telephone operator, but none of the two careers were appealing to her.
She felt a strong inclination towards counselling because she was convinced she could talk to her peers in similar situations and empower them with information about HIV.
“So many of my peers had died due to lack of adherence to medication, so I wanted to appeal to those youths or adolescents who do not take their medicines on time or to those who do not understand what HIV is,” she said.
In 2012, she completed her lessons in computer basics and last year, she pursued a course in clinical counselling at Chainama Hill College in 2013.
Today she works with persons living with HIV and disabilities.
Her future immediate future plan is to start an organisation that will be friendly to both persons with disabilities who are also living with HIV.
“I feel so much has been done to cater for people living with HIV, but we forget that even people with disabilities also get infected with HIV.
For her, the major question remains how to talk to somebody who has a disability as a result of being living with HIV or how to cope with the two,” she said.
She hopes to continue encouraging adolescents living with HIV, as well as emphasise on prevention for adolescents who are HIV negative,” she said.
She hopes to continue contributing to the fight against stigma towards people living with HIV.
About two weeks ago, she was a recipient of the United States President’s Plan for Emergency Relief (PEPFAR) 2014 award, in recognition of her resilience in the fight against HIV.
Born HIV positive, passed through challenges as regards her health, lost her sight and partially lost her audibility, yet still victorious, indeed her efforts are merit recognition such as that by PEPFAR and beyond.