A book telling the powerful stories of 13 child tuberculosis (TB) survivors and their families was launched today at the 49th Union World Conference, to raise awareness of childhood TB and stigma.
Blessi Kumar, CEO of the Global Coalition of TB Activists (GCTA) and a Union Board member, launching GCTA´s new book book Childhood TB & Stigma: Conversations of Resilience in the War Against TB, said: “To think that 650 children die from TB every day, with 80 per cent not even reaching the age of five, is heart wrenching.”
Childhood TB & Stigma tells the stories of child TB survivors and their families from countries such as Ukraine, India, Mexico and The United States and the extreme challenges that they went through and eventually overcame.
As Blessi explains a huge issue with TB is stigma: “Wherever you are there is stigma associated with TB. It doesn’t matter whether you are rich or poor, whether you live in a city or in a slum, whether you’re a daily wage worker or a professional. Stigma actually is there with every one of them.
“When there is no information there is fear and fear really reinforces the stigma.
“Every story in the book they said ‘we hid it from our relatives.’ So we need to break this chain of stigma and this can only happen if we make it dinner conversation. If we are not embarrassed to talk about TB, if we are not embarrassed to say ‘I survived TB’ that’s how the stigma is going to break.”
Nine-year-old South African Angelina is one of the survivors featured in Child TB & Stigma. Angelina suffers from a Primary Immune Deficiency. She was diagnosed with pulmonary TB when she was two years old.
Although Angelina doesn’t remember much about her fight against TB, she does recall that “the medicine wasn’t very nice.” She added: “I’m glad to have survived it and can be here talking about it.”
Janet, Angelina´s mother, said: “Angelina didn’t cough at all. When I told the principal of Angelina’s school that she had TB, she was shocked and asked me to not tell anybody about it. She was worried that the other kids would pull out of class and stop attending school.
“Being a healthcare professional myself, I could confidently address her concerns. I got a certificate from Angelina’s doctor and brought the principal material on TB for her to read, and she agreed to let Angelina come to play school. But my heart goes out to the children and their families in more difficult circumstances who bear the brunt of an enduring stigma every day of their lives.”
The book is one of a number of activities taking place this week to fight child TB in the hope that with collaboration and commitment from all every child will be given the human right to health.
Download the book here: Childhood TB & Stigma: Conversations of Resilience in the War Against TB