Nine-year-old TB survivor Angelina and her mother Janet tell their story challenging stigma and highlighting the urgent call to action for every child to have equal access to healthcare.
On World Children’s Day, 20 November, nine-year-old tuberculosis (TB) survivor Angelina and her mother Janet, from South Africa, tell their story challenging stigma and highlighting the urgent call to action for every child to have equal access to healthcare and to end the silent epidemic of one million children every year falling ill with TB.
Nearly 650 children die from TB every day, and 80 percent of those deaths are in children under five years old. Children with TB rarely die when they receive standard treatment for the disease. But 96 percent of the children who died from TB in 2017 did not have access to treatment and 75 percent of children eligible for preventive therapy did not receive it[1].
This massive toll of deaths among children results from systematic disregard for children’s rights to health. This neglect can no longer be excused on grounds of economy or expediency. Every child has the right the health.
Nine-year-old Angelina was born with a primary immune deficiency. For more than a year before her TB diagnosis, she had been unwell as a result but when, at two years old, she developed recurrent pneumonia and stopped gaining weight, it was clear something else was going on.
Her mother Janet describes the experience.
“From about two months before her TB diagnosis, she was particularly unwell, having fevers every night. She wasn’t coughing but she was very lethargic, she had no appetite, she wasn’t putting on weight or growing.
“To help you understand what I mean when I say not gaining weight – she was eight kilogrammes when she turned one year old. When she turned two, she weighed just 8.3 kilogrammes.”
The doctors sent her to specialists and ran several tests. Eventually, a chest X-ray and a blood test showed she had TB. The doctors tested everyone close to Angelina for TB but all the results came back negative.
“We had no known contacts”, said Janet, “but in South Africa, TB is very prevalent. The doctors said that it really could have come from anywhere – that because of her poor immune system, even if we were in the shops and someone coughed on her it’s likely that she could have picked it up from there.”
Angelina doesn’t remember being sick but she does remember the medicines.
“They weren’t very nice. They were bitter – very bitter. And they were red and had grains in them. I used to beg my mum for sweets after taking them to get the taste out of my mouth”, she said.
Janet, a pharmacist, was determined to use their experience to educate others about TB.
“When we first found out about her TB, I went straight to the principal of her crèche where she was and they were very concerned. They asked me not to tell any of the other parents because they were concerned other people would take their children out of school.
“We had a letter from Angie’s doctor to say she was no threat to any child because she wasn’t coughing. She was definitely not infectious – she couldn’t transmit to anybody. I told the principal that she could direct any questions to me. I didn’t mind if parents phoned me if they were worried. A copy of the doctor’s letter and other information was made available to the school to try and educate people about it.
“I felt it was extremely important to spread the knowledge that TB can happen to anybody and it’s nothing to be ashamed of. We were in the position to be able to empower others with knowledge.”
She was allowed to stay in school and after six months of treatment, Angelina recovered from TB.
“She did well in her treatment and once we also got her immune condition under control she’s done really, really well. She does everything that any normal child does”, says Janet.
When asked about her experience now, Angelina said “It’s been an amazing opportunity to be here and share everything. I never knew that a sickness could turn out to be something good.”
Angelina’s story was included in ‘Childhood TB and Stigma’, a book launched during the 49th Union World Conference on Lung Health in The Hague, the Netherlands, where Angelina also spoke to media and delegates about her experience. The book shares stories of children worldwide who have battled – and beaten – TB and the stigma that often accompanies it.
[1] World Health Organization 2018 Global Tuberculosis Report