Nonhlanhla Kotwane
Nonhlanhla Kotwane’s story is one of remarkable resilience and positivity in the face of significant health challenges. Born in Soweto, South Africa, Kotwane has been living with chronic kidney failure for 30 years and has had a hearing impairment for 21 years. Despite these challenges, she maintains an inspiring outlook on life and a determination to make a difference.
Diagnosed with kidney disease at just 7 years old, Kotwane has undergone three kidney transplants, all of which unfortunately failed. She now relies on dialysis treatments three times a week at Charlotte Maxeke Academic Hospital in Johannesburg, a gruelling routine she has maintained since 1994. In addition to kidney failure, Kotwane was diagnosed with Alport syndrome as a teenager, leading to permanent hearing loss.
Rather than letting these challenges defeat her, Kotwane has channelled her experiences into advocacy and education. In 2017, she founded Urication NPC, a nonprofit organization focused on raising awareness about kidney failure and providing free clinical screenings. Her goal is to make these vital health services more accessible, especially in disadvantaged communities.
Kotwane’s positive attitude shines through in her approach to life. She expresses gratitude for being alive and finds contentment in small joys. Her resilience is evident in her willingness to consider another transplant, despite past disappointments, saying, “This time I could be rewriting my story differently and it could be more pleasing than what I have experienced in the past.”
Looking to the future, Kotwane harbours dreams of driving her own car and becoming an ambassador for hearing aids awareness. Her story serves as an inspiration, demonstrating how one can find purpose and positivity even in the most challenging circumstances. Through her work with Urication NPC and her personal journey, Nonhlanhla Kotwane continues to be a beacon of hope and strength for others facing similar health challenges.
THISABILITY Newspaper recently had a chat with her.
TN: How has living with end-stage CKD (Chronic Kidney Disease) and a hearing impairment for most of your life shaped your perspective on personal growth and resilience?
NK: I have been living with CKD for 30 years now and it has been a tremendous ride filled with all sorts of mixed emotions. I have experienced some of the most beautiful moments that I hold so dear within my heart. I also had painful moments which were my greatest teachers and some of the most humorous times which became my remedy for my peace. So truly speaking, I somehow managed to tackle the negative energies which were coming in blaze from almost every direction of my life, and I have to say that when my hearing was affected, it was like the biggest fire ball had just hit me and it was over…but it then hit me that “I keep waking up in the morning”. Clearly there has to be reason and with me being “MISS CURIOUS,” I just kept moving with life and every green light it had to offer me until I figured myself out and what brings me joy. Mind you, all this happened with God by my side.
TN: You mentioned falling in love with your hearing aids and dialysis machine. Can you elaborate on this shift in mind-set and how it impacted your approach to living with your health condition?
NK: Whenever I would be heading to hospital using public transport, I’d experience difficulties hearing the taxi driver’s instructions. I have to say that it felt like a conundrum and there was no escaping. The fact that I became wise enough to recognize the fact that I just had to accept that I had to stop having expectations and leave room for disappointment…that made my life easier. The shift was quite simple for me to do, and I continue to live by these tricks:
- Hearing aids: I learned to ignore negative energies, as much as I’m aware that they are part of our daily life I still prefer my focus to be within constructive and informative environment.
- Dialysis machine: I respect that machine because it saved my life as it is the last option I had and to this date I am still using a haemodialysis machine due to not having any functioning kidneys even after three post transplants, it is keeping me alive and propels me to reach for my dreams and hopes.
TN: What inspired you to start an organization teaching about kidney disease in 2017 and how did this experience contribute to your personal development?
NK: There would be times where I would be admitted due to a minor glitch that would take place within my body leaving not feeling well and I would see different people of all races finding themselves being diagnosed with ACD (Anaemia of chronic disease) and CKD. I have to tell you that it was really disturbing having to watch people die because of this condition. So, it hit me once again that “hey educate people!” I had no idea where or how I was going to do this, but I was eager, so I figured that this information was better delivered to schools, during parents meetings and community halls. The outreaches have made a huge impact in my life, and it has been an eye opener at the same time. It encompassed my entire journey to being more like a lesson for me too. Forming URICATION NPC was my first-hand proof that nothing is impossible and as much as it can be difficult, it is the first thing I’ve ever created from a mere wish and managed to accomplish. It has given me so much strength and courage in wanting to accomplish more. I was able to find my feet through URICATION NPC and met people like Ms Ntsoaki Phali, an advocate for employment for persons with disabilities. I never thought I would find myself in the same room with her and most of all, I realised that, even my condition and my disability, I was still able to rise above the odds.
TN: You discussed the pressure to feel accepted and struggling with your reality. How did you overcome these challenges and what advice would you give to others facing similar struggles?
NK: When I had my first transplant back in 1995…my entire life became somewhat “peculiar” all because I gained a lot of weight, and I was only 8 years old. I began to hate school, hated going to church, hated being sent with my cousins to the store… basically I hated going out but somehow, I just grew a thick skin to just suck it in and get it over with it from a very tender age. But I have to be honest that some days were really hard that I found myself at the social workers’ doorsteps and referrals to psychologists but at a later stage, I got to a point where I learnt that there are situations which are way beyond my control. Some of them are just perpetual cases that somehow down the line, a way will open up…as I strongly believe “where there’s a will there’s a way”. I had to come to terms that, even though I may know people who are physically healthy, I had to focus on what worked best and better for me and my ability. I had to accept that this life was given to me for a reason and there was no escaping. I had to learn to love it, to embrace it, to be strong with it and carry it on my shoulders with pride.
I would advise someone with a similar problem not to compare themselves with anyone, they have a strength they carry, they are in this world for a reason. I would also tell them that they become what they breathe life into…so I encourage them to breath love and positivity into life…they will never regret.
TN: Despite physical pain and difficulties, you face, you mentioned having big dreams. Can you share more about these dreams and how they relate to your desire to bring hope and touch the lives of others?
NK: Despite these pains I go through, I still want to complete and have my book published. Some of my dreams scare me but I would love to achieve them; running a mobile clinic for health screening, working or freelancing for a company as a writer or typist and lastly, I want to create a page where I would have photos of any person with a disability and have their story documented. I would love to realise these dreams as I know that I will be fulfilling these dreams for a lot of individuals too. This will also send a message that, irrespective of your struggles, nothing is impossible…a helping hand is all it takes.
