When Minenhle Mofokeng was 4 years old, her mother became worried about her daughter’s poor health, as she was constantly losing weight and had no appetite. She took her to several doctors before she finally got a diagnosis. Tests confirmed Minenhle had type 1 diabetes, an autoimmune condition that leaves the body unable to produce insulin, and there’s no cure.

Now 12 years old, Minenhle continues to manage her diabetes with the help of her mother.

“It was painful when I found out, and it is still painful,” says Minenhle’s mother, Busisiwe Maseko, who lives in Vila Rosa, Boksburg, on Gauteng’s East Rand. “She has to go through so much at such a young age.”

What is Type 1 Diabetes?

Type 1 diabetes is an autoimmune condition where the body’s immune system mistakenly attacks insulin-producing cells in the pancreas. Without insulin, glucose cannot enter cells to provide energy, leading to dangerous blood sugar spikes. It is unrelated to diet or lifestyle, can affect anyone at any age, and requires lifelong daily insulin treatment and blood sugar monitoring.

Busisiwe says healthcare workers taught her how to manage Minenhle’s condition, including how to administer insulin correctly and rotating injection sites rather than repeatedly injecting into the same area. She was given a glucose testing machine and testing strips when they visited the hospital for their three-monthly check-ups. 

Although they are armed with the knowledge they need, managing the condition has not been easy for the family. Minenhle’s blood sugar levels remain high, often hovering around 14 mmol/L, well above the recommended healthy target of 4 to 7 mmol/L.

“When she gets sick, she becomes weak and loses weight very quickly. She vomits, becomes weak and sometimes struggles to recover.”

The family tries to stick to the diet recommended by their healthcare providers. Busisiwe says they’ve also changed their eating habits to ensure Minenhle does not feel different from the rest of the family.

“We try to eat the same food so that she doesn’t feel discriminated against. I have even stopped using cooking oil altogether because her sugar levels are always so high.”

Ensuring children’s dreams don’t die

Journalist Pitso Molemane knows all about the psychological toll of being diagnosed with type 1 diabetes as a child; at a very young age he was told he wouldn’t live long. Now, over four decades later, Molemane is an active ambassador for diabetes care and education.

“Having lived with type 1 diabetes for 43 years, I want young people to know that diabetes does not mean the end of their dreams. I have experienced life-threatening complications, including a minor stroke and eye challenges, but my life changed when I improved my knowledge of diabetes and adopted a healthier lifestyle alongside my medical treatment,” he says.

Molemane uses his lived experience to educate, encourage and support others through his Fighting Diabetes initiative and the podcast he hosts, Fighting Diabetes with Pitso Molemane.

Healthy eating and physical activity are important for management, he adds, but they do not replace the insulin someone with type 1 needs to survive.

“We must stop blaming children or their parents for the condition. Blame creates shame, while accurate information encourages early diagnosis, appropriate treatment and better support.”

Recognising the warning signs

Molemane outlines the 4 warning signs using the “4Ts”:

• Thirst: Unusual or excessive thirst.
• Toilet: Urinating more frequently, including waking at night or new bedwetting.
• Tiredness: Extreme fatigue.
• Thinness: Unexplained weight loss.

“Other symptoms may include increased hunger, irritability, vomiting, abdominal pain, deep or rapid breathing and unusual drowsiness which may indicate diabetic ketoacidosis (DKA).  These signs can develop quickly in children with type 1 diabetes and can cause a life-threatening emergency that requires immediate hospital care,” he said.

He urges parents to seek urgent medical assessment and to tell healthcare professionals they are concerned about possible type 1 diabetes and request an immediate blood glucose test.

“Early recognition and treatment can save lives. Trust your concerns, act quickly and never ignore the warning signs.”

Navigating school, stigma and self-care

Molemane says school life can present challenges.

“Children face the fear of being different at school, among friends and in social settings. Some may feel embarrassed about injecting insulin, checking their blood glucose or explaining why they need to eat at certain times.” 

“They may fear being teased, judged, rejected or treated as though they are weak. Worst case scenario, others may even hide their condition because they want to fit in with their peers.”

He says it is particularly worrying when embarrassment leads a young person to skip insulin injections.

“Missing an insulin dose can cause dangerously high blood glucose and, in some cases, diabetic ketoacidosis, a life-threatening emergency. At school, children may struggle to find a private, clean and safe place to administer insulin, store their supplies or manage their condition during lessons, sports and examinations,” said Molemane.

He suggests that schools should work with families and healthcare professionals to develop an individual diabetes care plan. School staff should learn how to respond to low or high blood glucose and help diabetic children access their prescribed supplies, food and medical care when needed.

“Privacy should be offered when a child wants it, but no child should be made to feel that diabetes is something dirty or shameful. Unfortunately, this pressure can lead some young people to hide their condition or skip treatment, which can be dangerous,” he said.

He says peer support should complement, not replace, professional medical care.

“If we empower young people with knowledge, positive role models and supportive communities, we can help them move from fear and secrecy towards confidence and responsible self-management.”