Ayanda Nxasana was born with one regular kidney and one small one, a condition that led to renal failure as a teenager. She also suffers from lupus and is dyslexic – but none of this keeps her from managing her health and staying positive.
Ayanda Nxasana was 16 when she was diagnosed with Chronic Kidney Disease (CKD), a condition that is estimated to affect as much as 15% of the South African population.
The disease, also known as chronic renal failure, describes the gradual loss of kidney function, resulting in a dangerous build-up of fluid and wastes in the body. Treatment for CKD focuses on slowing the progression of the kidney damage, as end-stage kidney failure is fatal without artificial filtering (dialysis) or a kidney transplant.
“When I started dialysis, I was the only kid there,” says Ayanda, a Discovery Health Medical Scheme (DHMS) member. “I was confused and scared. I used to cry myself to sleep every night back then. I couldn't explain what dialysis was to my high school friends and they couldn't understand what I was going through. I didn’t want to go to school, and it took me quite a while to look at life in a different way.”
Learning to focus on the positive
What helped change her perspective was the support she received through Discovery Health’s KidneyCare programme. The programme is based on international best practice guidelines and aims to ensure patients with CKD get the best quality of care and quality of life.
“I was going through a hard time in high school,” recalls Ayanda. “My mom passed away when I was 13, so I was living with my gran and extended family at the time. My specialist was worried about me becoming depressed, so she wrote me a referral letter.”
“A case manager at Discovery called me to see how I was coping. She was so supportive, and I shared so much with her. She always made me smile, and she reminded me to be grateful for my family and friends. I don’t even think it was part of her job, but during that rough time, she called me every day.”
Education is key to managing a chronic condition
Ayanda also learnt a lot from the information sent to help patients better understand and manage their condition. “I remember receiving my first kidney booklet when I was in grade 11,” she says. “It explained what was happening – I learnt so much! I still get emails that teach me about my kidney problem and how to deal with it. I've changed the way I eat, the way I exercise... having my condition has changed me, but it’s made me into a better person.”
Errol Gottlich, Clinical Manager of KidneyCare at Discovery says, “We understand that living with chronic kidney disease is a lifelong journey, often made difficult because of the need for regular care, complex medicine, restrictive diets, and many tests and investigations. The KidneyCare Programme was designed to make it a bit easier for our members, on chronic dialysis, to manage their condition.”
According to the National Kidney Foundation of South Africa, CKD is a growing healthcare problem, with some 20 000 new patients requiring dialysis and treatment every year in South Africa. Kidney transplantation is much needed, although it is not a quick fix: “A new kidney requires a lifetime of care, including taking daily anti-rejection medication,” according to the National Kidney Foundation. "However, it gives people with kidney failure a chance to get their old lives back, free from dialysis.”
‘They call me the smile keeper’
“I would like to get a transplant as soon as I can, but I am waiting patiently for it,” Ayanda says. “For now, I am stuck with dialysis, but I stay as positive as I about it. I fight every day with a smile on my face. That’s why they call me the smile keeper!”
Ayanda turned 24 in October 2018, and is committed to healthy living, as well as spreading awareness about her condition. “Many people are not educated about this disease. They don't know how to prevent or manage kidney failure any stage, so I’m very vocal about my chronic condition. I speak about it and I post about it on Instagram on Facebook. I make people listen so they’re aware this disease is out there, and I'm living with it, but it’s not keeping me from anything.”
She adds: “I want to make more people aware that having a chronic condition doesn't have to stop you from traveling the world or accomplishing your goals in life. That’s what I tell the little ones that I now see at dialysis. Keep your head up and stay strong, because better days are yet to come!”
The Discovery Health Medical Scheme is an independent non-profit entity governed by the Medical Schemes Act, and regulated by the Council for Medical Schemes. It is administered by a separate company, Discovery Health (Pty) Ltd, an authorised financial services provider.
Get quality care with the DHMS KidneyCare programme
The KidneyCare Programme is designed to ensure that Discovery Health Medical Scheme members living with chronic kidney disease are managed according to international best practice guidelines, to ensure the best quality of care and quality of life. Find out more about the KidneyCare programme.
Get trusted Doctor advice on your device with Discovery DrConnect
You can now get trusted Doctor advice on your device with Discovery DrConnect. Through the Discovery app and website, you now have access to a growing library of over 5 billion doctor-created answers to medical questions or you can get a personalised answer from a doctor, at no additional cost to you. Find out more and how you can download the Discovery DrConnect app here.
Also, you can find out if you have a family history that suggests you may have a higher than average chance of developing certain health conditions using the MyFamilyHistory assessment.
Globally, 1 in 10 people suffer from Chronic Kidney Disease (CKD), marked on 8 March – World Kidney Day. However, most people who have the disease don't know they do. Awareness is key to prevention, so here are 8 ways to care for your kidneys.
Brian Anderson, is a minor walking miracle. He's had 93 operations, including two kidney transplants and been on intermittent dialysis for 22 years. He's passionate about raising awareness around Chronic Kidney Disease and organ donation.
Kidney disease has largely indistinct symptoms, which means that most people have no idea they’re headed for renal failure. Here’s how to find out if you’re at high risk, and what to do about it.