 As Africa struggles with HIV/AIDS, malaria, armed conflicts and other tragedies, the plight of people with hemophilia could easily be overlooked, were it not for WFH volunteers like Mirriam Mokwena.
The South African nursing sister adopted hemophilia care as her mission some 10 years ago when she found that many patients were often diagnosed or treated too late to prevent disability or early death.
“It’s heartbreaking to see a child who’ll never be able to walk again because his parents didn’t know what to do,” says Mirriam. “Information is vital for hemophilia patients, so I began outreach training and education for people in the black townships and villages.”
Conducting workshops and information sessions often involve long and sometimes dangerous travel. She’s braved jungle tracks, dusty roads, and floods to meet patients and their families, who had frequently never heard of hemophilia.
“I organized intensive training in six provinces on the signs and symptoms of hemophilia, what treatment was needed and where to find it,” says Mirriam. “Forget PowerPoint presentations where there’s no electricity! My most valuable teaching tool was the WFH’s Hemophilia in Pictures folder. The pictures are amazing, and easy to follow.”
Mirriam’s communication skills were also valuable: “Black people would open up to me. I was more like a sister to them. I spoke their languages and understood their culture and background. Knowing their limitations and difficulties we worked together to solve their problems.”
“Forget PowerPoint presentations where there’s no electricity! My most valuable teaching tool was the WFH’s Hemophilia in Pictures folder. The pictures are amazing, and easy to follow.”
The outreach training paid off. Diagnosis of people with hemophilia increased and eventually more urban and rural hospitals in South Africa started to treat patients. But Mirriam saw there was more to be done, especially for patients who had crossed the border for hemophilia treatment in South Africa. Following up on their treatment and care took her to neighboring countries such as Namibia, Lesotho, and Botswana.
“My role in outreach was extended when I joined the WFH Nurses Committee. We discovered that the biggest obstacle to care for people with hemophilia a was lack of information by health professionals.” So, in 2002, Mirriam and her colleagues started a course in South Africa that provides hemophilia training for medical workers from across the continent.
“We touch so many people on this journey,” she says.
And those people touch others.
The sight of patients receiving treatment for their bleeds, with reduced joint damage and deformities has motivated nurses elsewhere to follow Mirriam’s example.
“I was seen as a motivator by other nurses in the other countries, more nurses wanted to be like me, and do their jobs like me. I was also inspired when people with hemophilia and their families from other countries turned to me for help.”
Mirriam does not hesitate when asked to sum up her years as a WFH volunteer: “I love my job. I’ve been a treater, an educator, an advocate, a sister, and a mother.”
Last Updated July 2007
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