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March 28th 2018 was a joyous day; we officially launched our early childhood development program at our local multi-drug resistant TB unit. There were speeches and thank yous, singing and dancing -brand new clothes for all the children – Overall a heart-warming and happy occasion.
As we were winding down a woman came up to me with tears in her eyes. I paraphrase – “I cannot thank you enough for what you are doing here. I work with children with this disease all over the world. So many of them are locked away. To see the love and joy here is amazing. Thank you.”
I was stunned. I had never really thought about the fear and the stigma associated with this difficult to treat and yet curable condition.
This woman is Dr Jennifer Furin, director of capacity building at the Sentinel project, (www.sentinel-project.org) a global partnership of researchers, caregivers and advocates who share a vision of a world where no child dies from this curable condition.
On reflection it is true. People are scared. We often have folk wanting to volunteer with the kids until they hear that they have drug resistant TB. Pharmacist and MDR TB expert Nirupa Misra in her speech said, “You are more at risk of contracting MDR TB in a taxi. The kids in the hospital are all already on treatment and therefore less infectious. “
With all diseases, at Umduduzi we believe it is not about surviving, but rather thriving. All children need to access play and education. They deserve a right to thrive with good quality of life even when faced with serious illness and horrible circumstances that leave them hospitalised for months and months. It is time for a paradigm shift.
I love this definition from the World Health Organisation – Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.