Beyond insulin injections: What growing up with diabetes really looks like

hen diabetes becomes personal

For Aidana Kabiyeva, an endocrinologist and head of the Diabetes Center at Viamedis Pavlodar, diabetes is more than a medical diagnosis.

Her first encounter with the disease came when she was just five years old, when her cousin was admitted to intensive care unconscious and diagnosed with Type 1 diabetes.

Years later, while studying medicine, she received another alarming call. Her aunt explained that Kabiyeva’s younger sister had suddenly lost weight, was constantly thirsty and looked noticeably different.

Recognizing the warning signs, Kabiyeva advised the family to check the girl’s blood glucose. The reading was extremely high, and the diagnosis was later confirmed.

“Diabetes stopped being just a disease from medical textbooks. It became part of my family’s life. What surprised me the most was not the disease itself, but how profoundly the diagnosis changes the everyday life of an entire family. Behind glucose readings, glycated hemoglobin levels and insulin doses are parents’ worries, fear of hypoglycemia, sleepless nights and the enormous responsibility of making decisions every day,” Kabiyeva recalled.

The experience strengthened her decision to become an endocrinologist and shaped her approach to patients.

“For me as a doctor, it is important not only to prescribe the right treatment, but also to explain, support and educate patients and their loved ones. To give them the knowledge and confidence that they can live full, active and happy lives with diabetes,” she said.

Four warning signs parents should never ignore

Type 1 diabetes can develop rapidly in children, yet its early symptoms are often mistaken for ordinary childhood changes.

According to Kabiyeva, parents should watch for four key signs:

• Constant thirst, including drinking unusually large amounts of water at night.

• Frequent urination, particularly when accompanied by increased thirst.

• Unexplained weight loss, even when the child is eating normally.

• Unusual fatigue, weakness or loss of interest in everyday activities.

“Parents often attribute increased thirst to hot weather or physical activity, frequent urination to a cold, and weight loss to normal growth. Meanwhile, a child may continue eating well but still lose weight, become tired quickly and lose interest in usual activities,” Kabiyeva explained.

More serious symptoms, including vomiting, abdominal pain and extreme drowsiness, may indicate diabetic ketoacidosis, a potentially life-threatening complication.

“Unfortunately, some families seek medical help only when nausea, vomiting, abdominal pain and severe drowsiness appear. These symptoms are often mistaken for an intestinal infection, although they may indicate diabetic ketoacidosis. If a child starts drinking unusually large amounts of water, urinating frequently and losing weight without an obvious reason, blood glucose should be checked that same day and a doctor consulted,” she warned.

A childhood that never takes a break from diabetes

Living with Type 1 diabetes requires far more than insulin injections.

Children must monitor their glucose levels, account for meals and physical activity, and respond to unexpected changes, even during school hours or overnight.

“Imagine an ordinary morning that begins not only with breakfast and getting ready for school, but also with checking glucose levels, calculating carbohydrates and administering insulin. And before that, there may have been nighttime awakenings and blood sugar checks. Sports, birthdays, sweets and travel are all possible for children with diabetes, but they require more planning,” Kabiyeva said.

However, she believes the emotional burden is one of the most overlooked aspects of the disease.

“Imagine having to monitor your glucose levels, calculate carbohydrates, administer insulin and constantly think about possible hypoglycemia every day and night, without weekends or holidays. For a child, this is an enormous responsibility, especially during adolescence, when they want independence, freedom and the chance to be no different from their peers,” she explained.

Some children feel embarrassed checking their glucose or administering insulin in front of classmates. Others experience diabetes distress, a form of emotional exhaustion associated with the constant demands of managing the condition.

“Behind good glucose readings, there may be someone who is emotionally exhausted by their diagnosis. It is important not to scold children for high readings or turn every measurement into an assessment of their efforts, but to support them, educate them and gradually help them become independent,” Kabiyeva emphasized.

Can technology make life easier?

Modern devices have significantly changed diabetes management.

Continuous glucose monitors can track glucose levels throughout the day and alert users to potentially dangerous changes. Insulin pumps provide more flexible insulin delivery, while some automated systems adjust delivery based on glucose readings.

“These technologies are not simply about convenience. They allow children to feel more comfortable studying, playing sports, sleeping and traveling, while giving parents greater peace of mind. Of course, technology does not eliminate the disease or the need for daily management, but it significantly reduces the burden on children and their families,” Kabiyeva explained.

However, access to modern diabetes technology remains a concern in Kazakhstan.

“The availability of certain medical devices within the healthcare system does not mean that all children have equal access to them. I would like modern technologies to become an accessible part of quality medical care for every child with diabetes,” she said.

What every school should know

Another challenge is ensuring that children with diabetes are safe at school.

Teachers should recognize signs of hypoglycemia, or dangerously low blood sugar, which may include shaking, sweating, sudden weakness, dizziness and confusion.

If a child is conscious and able to swallow, fast-acting carbohydrates should be given according to the child’s diabetes care plan, followed by a glucose check. If the child loses consciousness, emergency services must be called immediately. Nothing should be given by mouth, and trained personnel should administer glucagon if available.

“Every teacher and caregiver should know the signs of hypoglycemia. I believe every school attended by a child with diabetes should have a clear emergency response plan, and teachers and medical staff should receive appropriate training. Most importantly, a child should not feel alone with their disease. Their safety is a shared responsibility of parents, healthcare professionals and schools,” Kabiyeva said.

A diagnosis does not define a child’s future

Although Type 1 diabetes requires lifelong insulin treatment, children with the condition can study, play sports, travel and pursue their ambitions with appropriate medical care and support.

For families facing a new diagnosis, Kabiyeva offered a message shaped by both her medical experience and her family’s story.

“Your life will change, but it has not ended. Your child still has a future full of possibilities. Yes, the beginning will be difficult. You will have to learn a great deal, understand insulin therapy and glucose monitoring. But with time will come knowledge, confidence and the understanding that a full life with diabetes is possible,” she said.

“Do not blame yourselves, do not be afraid to seek help, including psychological support, and most importantly, do not allow the diagnosis to overshadow the child - their dreams, wishes and individuality.”

Earlier, Qazinform reported that Kazakhstan’s Ministry of Health plans to digitalize school medical examinations and strengthen early detection of health conditions among children. The updated approach is intended to improve diagnostics and long-term health monitoring in schools.