Type 1 Diabetes: Inside teen's life where every prick means survival

An alarm rings at 6am every morning, and 14-year-old Johnny Chege wakes up to prick his fingers and check his blood sugar levels.

It’s a ritual Johnny has followed daily since November 2020, when he was diagnosed with type 1 diabetes at the height of the Covid-19 pandemic.

“It’s a school day, so I wake up at 6am to check my sugar level. I freshen up, then inject my Novorapid insulin before eating breakfast because I’ve already checked my sugar,” Johnny explains, describing his morning routine.

Before every meal, Johnny draws insulin into a pen and injects himself — a life-saving necessity that has become as routine as brushing his teeth.

Daily discipline

He doesn’t eat breakfast at school; instead, he waits until lunchtime and ensures he injects at least 15 minutes before the meal. “Then I calculate the amount of carbohydrates I’m about to eat. I paint a picture in my mind of how much food I want to eat, depending on how much my stomach can accommodate,” Johnny says.

He explains that visualising his food intake helps him inject the correct amount of insulin.

When he returns home to Bombolulu in the evening, he sticks to zero-carbohydrate snacks and enjoys some of his favourites, such as eggs.

At around 8:30pm, he has dinner, and later, by 10pm, he injects the Lantus pen, a long-acting insulin used to maintain stable blood sugar levels. “Depending on my sugar level, I take something before bed. If it ranges between nine and 12, I take half a glass of milk. If it’s around eight, I’ll add a slice of bread or have a piece of fruit,” he adds.

Johnny’s father, Ken Chege, recalls how it all began, with persistent thirst and frequent urination, despite Johnny having had a normal childhood.

“We started noticing ants gathering around the toilet bowl after he had used it. He would also take two litres of water to bed and finish it by morning,” recounts Chege, a resident of Mombasa.

Worried, the parents took their then nine-year-old son to a paediatrician, who recommended both a blood sugar test and a haemoglobin A1C test — which confirmed their fears.

It was type 1 diabetes.

They were immediately provided with a mixed-start insulin to begin managing the condition, along with a sugar level testing kit. “Having a child with such a condition was devastating for us as parents. This is something you have to manage every single day. He has to test his sugar regularly. He has to inject himself every time, it’s not easy for a child, or even for the parents,” Chege shares.

Since there were no paediatric endocrinologists in Mombasa, Johnny’s parents were referred to Nairobi, where they began their treatment journey.

“At first, it took time to process the diagnosis. I was in denial because I went from having a normal life to suddenly being someone who needed injections every day,” Johnny recalls.

Crucial support

Initially, the family struggled to manage the condition, particularly in a school setting. They had to explain the situation to Johnny’s teachers, who fortunately responded positively and took it upon themselves to help supervise him during the school day.

It wasn’t until 2023 that Johnny began to truly adapt, following consistent advice from doctors and his parents. He started practising how to calculate food portions and better manage his diabetes.

With the aid of technology — such as a glucometer and mobile applications — monitoring has become easier for both Johnny and his parents.

“Now, when he tests his sugars while at school, we can monitor it through the app on our phones. We see when he’s tested and help track his sugar levels over time,” says Chege.

However, the cost of treatment remains a significant burden for the family.

Although Chege’s employer provides medical cover that assists with Johnny’s check-ups, it’s not enough to cover all the expenses. “I still have to dig into my own pocket, spending between Sh15,000 and Sh20,000 a month. An insulin pen costs about Sh2,400, plus the testing kits and strips, and you can imagine, he tests his sugar four to five times a day,” he explains.

In addition, Johnny requires a full medical check-up annually, further adding to the financial strain.

Chege notes that apart from the cost, a lack of awareness also complicates the management of type 1 diabetes in children.

He recounts an incident involving a young boy begging in the streets of Nyali, Mombasa, for money to buy insulin.

“That incident moved my wife and me to start raising awareness, because many people can’t differentiate between type 1 and type 2 diabetes — especially in children,” he says.

Since then, the couple has transformed their personal experience into advocacy, organising awareness events in Mombasa to spotlight childhood diabetes.

Five years on, the family has adapted to the daily demands of diabetes management — from purchasing insulin and testing supplies to meticulously planning meals to help keep Johnny’s blood sugar in check.

Lifelong condition

Johnny’s endocrinologist, Dr Renson Mukhwana, explains that type 1 diabetes is an autoimmune condition in which the immune system attacks the insulin-producing cells of the pancreas. This distinguishes it from type 2 diabetes, which is often linked to lifestyle factors. “In children, type 1 diabetes isn’t caused by diet or inactivity; it’s a lifelong condition requiring daily insulin for survival. A balanced, healthy diet is recommended, focusing on carbohydrate portions that match insulin doses and meet bodily needs. Exercise is important — it supports bodily function, enhances insulin effectiveness, and helps with weight control,” says Dr Mukhwana.

He urges parents to watch for symptoms, such as excessive thirst, frequent urination (especially at night), fatigue, and weight loss, as early signs of diabetes in children.

He warns that early symptoms are often overlooked, leading to delayed diagnosis, sometimes only discovered after the onset of diabetic ketoacidosis, a life-threatening condition.

Dr Mukhwana also highlights the challenge of access: “Access to the right insulin preparations and glucose monitoring devices remains limited. Many schools lack nurses, and food insecurity in rural areas further complicates care,” he shares.

“Stock-outs in public health facilities aren’t uncommon. Insurance providers often restrict quantities or extend coverage limits. Currently, many children rely on partner-funded programmes, but we hope county governments will step in to provide free supplies,” he adds.

Beyond medical concerns, he stresses the emotional and social toll of living with diabetes. “It does affect the child. He must inject himself before every meal, which requires privacy. That can lead to stigma and emotional strain. Teachers should be aware of the condition and ready to offer support in case of emergencies,” Dr Mukhwana advises.

Though diabetes cases in children are increasing, he clarifies that the real spike is in type 2 diabetes, largely due to poor dietary habits and sedentary lifestyles.

“Better public and health provider awareness has improved diagnosis in children who might otherwise have been misdiagnosed or lost. Type 2 diabetes among teens is growing due to lifestyle issues and obesity,” he adds.

He says insulin therapy remains the gold standard globally, with emerging delivery systems, such as insulin pumps and glucose sensors, helping to reduce the burden of daily injections.

Diabetes burden

Kenya continues to grapple with a growing diabetes burden, contributing to complications such as blindness, kidney failure, heart attacks, strokes, and amputations.

According to the Access to Medicine Foundation’s 2024 report, approximately 6,500 children and young people under 20 were living with type 1 diabetes. That year, 1,400 new cases were diagnosed, and approximately 570 deaths were attributed to related complications.

The World Health Organisation also reported that adult diabetes prevalence in Kenya rose from 3.3 per cent in 2015 to around 4.0 per cent by 2021, with projections expected to reach 4.5 per cent by 2025.

In response, the World Health Organisation (WHO) and Kenya’s Ministry of Health have developed national guidelines and built networks of county-level diabetes clinics.

For Johnny, however, not all is lost — he still aspires to make a difference in society. “I really want to make an impact — to be among the first entrepreneurs living with type 1 diabetes. I used to play sports, but now I reflect more on my life. I play drums in church, swim, and cycle — it helps me escape reality,” Johnny shares.

He attributes his strength and motivation to the support of his family and friends.

Despite the challenges, the Chege family remains optimistic. “Sometimes his sugar spikes due to infections,” says Chege. “But with support from friends and family, we keep going.”