Dynamite in a small package
RAISING AWARENESS WHILE STRUGGLING WITH OWN KIDNEY DISEASE
In the heart of Soweto in the quiet suburb of Dlamini, Nonhlanhla Kotwane’s life story, woven with threads of perseverance and courage, unfolds. Born during the late 1980s, Kotwane’s personal struggles with kidney disease and hearing impairment have fuelled her mission as the founder of Urication NPC, a beacon of hope and education in the fight against kidney failure.
Her path has been marked by countless dialysis sessions, three transplant experiences and a profound struggle with physical limitations, all while championing the cause of kidney disease awareness.
“I started the nonprofit company (NPC) with two nurses, Tebogo Pule and Lindi Mokoena, from the paediatric wards where I grew up.
“We identified a huge need for more education, especially to address the rising numbers of kidney failure cases,” she said.
“Kidney failure is a silent yet deadly condition that communities often overlook.
“This cause is deeply personal for me, motivating me to actively participate in the conversation.
“The organisation focuses more on kidney failure than transplant because life doesn’t pause during dialysis while waitKotwane’s ing for a transplant.”
Kotwane was born with one kidney and has been living with chronic kidney disease for the past 30 years.
She travels 30km three times a week to Charlotte Maxeke Academic Hospital in Johannesburg for dialysis treatments – an essential routine she’s maintained since 1994.
The 36-year-old founded Urication NPC in 2017, a nonprofit organisation focused on educating and raising awareness about kidney failure.
The organisation offers free clinical screenings for urine – a primary element for detection in kidney failure.
“Our plans were to have screening done at schools. I’ve always imagined it as having a mobile clinic together with all the essential equipment.
“The screenings would take place at least twice a year within two different schools,” she said.
“Should any child have any symptoms then the parent would receive a letter of referral to have a proper check-up at clinic or hospital.
“The vision was to make these screenings more accessible especially to township and disadvantaged communities who are far from health services.”
story began with a diagnosis that would shape her life’s trajectory – renal failure at the tender age of seven.
This marked the onset of a lifelong battle against chronic kidney disease, a journey punctuated by dialysis treatments, transplant experiences and the enduring emotional toll of managing a complex medical condition.
“Growing up, I had to undergo peritoneal dialysis which meant being home every four hours.
“I had to cut breaktime and hanging out with schoolmates to undergo my second round of dialysis during lunchtime.
“I was always determined to avoid a hospital school because I’ve always been someone whose thinks out of the box,” Kotwane recalled. As she transitioned into adolescence, she faced another blow when doctors diagnosed her with Alport syndrome, a rare genetic disorder that resulted in permanent hearing loss.
This added layer of complexity as her teenage years were marked by internal struggle, as she grappled with questions of identity and purpose, while navigating the tumultuous terrain of growing up.
Despite undergoing three transplant procedures, two of which were unsuccessful, and experiencing organ rejection hours after the operation, she remained resolute in utilising her experience to drive a message of hope.
“I’m undergoing tests to assess the possibility of another transplant.
“Based on my history with three transplants, the experience was deeply disheartening.
“But I choose to remain positive. Should I be given another chance to have a transplant I will do it.
“This time I could be rewriting my story differently and it could be more pleasing than what I have experienced in the past.”
Undeterred by the physical limitations imposed by her health, Kotwane’s resolve to lead a fulfilling life remains steadfast, driving her to embrace opportunities that defy the restrictions of her daily circumstance.
She aims to achieve personal milestones like driving and assuming the role of an ambassador for hearing aid awareness.
This aspiration stems from her strong belief in advocating for individuals confronting similar health challenges.
“I strongly believe that one breathes life into what they believe in.
“The journey is not easy at all but once you find people who breathe positive energy into your life keep them.
“That is how I have been able to stay positive,” she added.
“There is still so much that I want to do such as being able to drive my own car, irrespective of how my condition is now, and being an ambassador for a hearing aid company.”
Should I be given another chance to have a transplant I will do it