Kidney disease sufferers finally given a voice

People living with kidney disease across the country can now hope for a much brighter future following the launch of the new Botswana Kidney Society (Bokiso) on Friday, February 27 in Gaborone. The society aims to among others, provide a voice for all the kidney disease sufferers in Botswana by advocating for services and treatment.
“The lack of advocacy organisation in Botswana compounds the challenges of people living with kidney illness who are also in need for dialysis treatment,” said Bokiso chairman Kitso Otlogetswe.
He said patients in need of dialysis treatment are highly disadvantaged by the fact that there are currently only two dialysis centres in the country (Gaborone and Francistown). He said the situation makes it difficult for patients living far from the two cities to receive treatment without having to relocate permanently. “Treatment is administered three times a week so how do you expect someone to commute from as far as Maun for dialysis?”
Otlogetswe, who has been receiving dialysis for eight years, said missing treatment is no option. “For all the years I have been receiving treatment not once have I missed,” he said. “You can’t afford to miss. If anything, you are better late than never.” He said besides the newly formed society there is currently no other organisation which coordinates, advocates, and represents the interests of kidney disease patients.”
Seboifeng Matsietsa (69) said he was diagnosed in 2008 after he had suspected for six years that something was wrong. He said the disease is not just for old people like many people believe. “It also affects young people,” he said. “We are launching this society to raise awareness about kidney disease.”
He said the nation has lost many kidney sufferers not necessarily to the illness itself but as a result of ignorance and negligence from the public, patients and the health professionals. Like Otlogetswe he also called for dialysis units to be spread strategically across the country for easy access.
Bokamoso Private Hospital’s Lesego Kalantle was also on hand to share a professional perspective on kidney disease. She said just like diabetes and HIV/AIDS there is no cure for kidney disease; only treatment.
“Even those with kidney transplants need to take medicine all their lives to ensure their systems do not reject the new kidneys,” she said. She said the illness takes control of one’s life. “It controls where and when you go because you will always have to visit the (dialysis) machine at one point or another.” Kalantle said it was a commendable step taken by the kidney disease sufferers to form the organisation. “You deserve all the support you can get.” Renal Care Institute Botswana (RCI)’s Kemofilwe Puso said they began dealing with kidney patients in 2009. “We started with only two patients,” she said. “One of them was as young as I was while the other was way younger than me and it was disheartening to see such young people suffering from kidney disease.”
She said not long after that the number of patients had multiplied so fast they struggled to accommodate them. She said they had already registered over 400 patients. She called on Batswana to appreciate the importance of donating organs to help those in need of organs like kidneys. “Transplanting can be a better solution than having to visit the dialysis machine every now and then.”
Giving testimony Churchill Sekoboko said he was initially diagnosed with high blood pressure. “I told the doctor it was impossible because high blood was for rich people,” he said. “He gave me some medicine but I put it away because I thought I was doing well.” Sekoboko said he was later diagnosed with diabetes and again threw away the medicine. It was only when he was diagnosed with heart and kidney diseases that he began to take notice. He said he was shocked at the diagnosis. “I wondered who would die and give me a kidney,” he said, to the amusement of the audience. “Now I have diabetes, heart disease, kidney disease, and high blood pressure.”
Mmamonyana Motimbiri also gave a poignant account of her experiences with kidney disease especially Peritoneal Dialysis (PD) treatment. She said the treatment was too painful. “When I first started treatment they used the PD method and it was excruciatingly painful. I have scars all over my body to show for it.” She was diagnosed in 2011. The Botswana Kidney Society is a major voluntary nonprofit health organisation dedicated to preventing kidney diseases, improving health and well-being of individuals and families affected by kidney disease as well as increasing the availability of all organs for transplantation.