Lungelo Hadebe is an activist and the founder of YOU CAN Activists. We asked him to share his story of diabetes, dialysis and the desire to make a change.
An early diagnosis
“I was diagnosed with diabetes at the age of 9 years. It has been 21 years formally diagnosed! As much as I could not understand what was happening, I remember that I was visiting my cousin over the school holidays and my aunt recognised symptoms that needed attention. My holidays were cut short. Upon arrival at home, my dad took me to a local GP, Dr Cele. She then undertook some tests and diagnosed me then.
I still remember the long conversation she had with my dad. I seem not to forget this as I can clearly recollect the worry and concern of my dad who was already living with diabetes. Both my mom and dad tried their best to ensure that I have a kit to ensure proper management of this condition. It was even easier to accept as one of my neighbours, of a similar age group, was a known diabetic and she lived a normal life. I just struggled with the sweeteners in my tea instead of sugar!”
“17 years after being diagnosed, I developed nephropathy (kidney disease). I was working and starting to enjoy the adult independence that I had always looked forward to. I started gaining excessive weight despite the active life I had. I lived in a communal setting with very active friends. We did a lot of camping, fishing and travelling. Oh, of course, a lot of braais too!
I then developed flu-like symptoms with a very strange cough. My boss, Prof Potgieter, suggested that I get it checked and take a day off from work. I consulted a doctor who suggested I go to a hospital immediately as the swelling in my body was not normal, and was rather concerning. I then went to to Grey’s Hospital as I was residing in Pietermaritzburg.
After a long process to access the services of a physician nephrologist, I was diagnosed with Chronic Kidney Disease (CKD) and was already on End Stage. I think it is worth it to emphasise that the months long waiting period before a person can access the counsel of a specialist in the public healthcare system is unreasonable and many do not make it to this stage. I had to force my way through as I could not wait another 3 months: I was terribly ill and struggling to breathe.
After a couple of months of trying to manage my kidney condition, I was eventually started on dialysis. The public system delays patients onto dialysis because of very limited resources and the unwillingness of the State to invest in such critical therapies. That’s what prompted me to start YOU CAN Activists.”
YOU CAN Activists
“When I was eventually started on dialysis, I was admitted into ward H1 at Grey’s Hospital for over a month. In this time, I was exposed to a world that I never knew existed. As much as I was faced by my own health hardships, here I was exposed to my peers’ double burden of poverty and kidney disease. I was exposed to a cohort of young people who believed the lie whispered by disease and disability that they can never change their lives for the better. I was further exposed to people who are deprived dialysis because of the unreasonable Renal Guidelines currently implemented by the State.
The rationing system provides that the State cannot give dialysis to patients who may not be transplantable, thus requiring dialysis therapy for life. Such patients deprived of dialysis by their own government are faced with two realities: to pay the over-priced cost of dialysis in the private healthcare system or simply go home and wait for death. I have seen so many settle for the latter. I was also a victim of the same policy and was rescued by the collective support of my family, friends, Enactus South Africa as well as the Islamic Medical Association. Even though I may not be part of the Muslim community, the IMA helped me and continues to help so many who are poor and vulnerable with dialysis.
On a random day, heavily burdened by health challenges, I walked out of the hospital ward to find a quiet area to sit and just let the tears I had held for some time run down. I sat and cried out in prayer; “I can’t, Lord, it is too much, I can’t.” I heard the steps of nursing sister walking towards me and she she exclaimed to me, “YOU CAN! YOU CAN!” and then she walked away. These words powerfully sustained me through the darkest moments. I then decided to make it my full time job to tell the sick and most vulnerable that yes, they can! We do this by being catalysts of social sustainability through health advocacy.”
Current YOU CAN projects
“We currently run Community Health Dialogues. This is awareness on the main causes of kidney disease: diabetes and hypertension. The project has 3 categories:
Kidney Kidz & Teenz
This focuses on visiting schools and teaching the importance of being intentional with our health. We drive this point home by highlighting the importance of drinking sufficient water every day, how bad sugar is and the importance of playing sports. We strongly believe that health should be as important as academics to children. Through healthy habits at a young age, we can lessen the burden on the healthcare system.
This part of the project focuses mostly on adults. The focus is on the importance of proactively controlling chronic illnesses such as diabetes and hypertension to avoid secondary complications such as Chronic Kidney Disease. This component also focuses on diet and holistic wellness. This is a proactive effort to help the over burdened healthcare system and the escalating demand for Renal Replacement Therapies such as dialysis.”
Get involved and support YOU CAN Activists!
“We are all about partnerships! We are willing to partner with other civic organisations, business, government as well as individuals. We welcome any form of support and partnership. If you believe in social sustainability; we are your colleagues.
What makes your life sweet?
“Seeing all the STARS prosper. The smile of a STAR who had given up is sweetest. Young people who are mindful of their health are even sweeter!”
What advice do you have for diabetics who are struggling?