Type 1 diabetes: Father says son gets comments such as ‘he must have eaten a lot of sweets’

Do not be quick to judge people who have diabetes for having taken too many sweets and soft drinks.

Seven-year-old Joshua Wong has been on the receiving end of such remarks since he was diagnosed with the condition three years ago.

What he has, though, is Type 1 diabetes, an autoimmune disease with no known cause. It is different from the more common Type 2 diabetes, which is linked to diet and lifestyle factors.

Joshua and his parents still get affected whenever he is misunderstood by others.

Once, the boy was taking a flu vaccination when a nurse remarked that “he must have eaten a lot of sweets, and that’s why he has diabetes at this young age”, his father Wong Soon Yeow recalls.

“We were very disappointed and disturbed by her comment. We felt that she has no compassion for children with Type 1 diabetes who need to be injected (with insulin) five times a day.”

Mr Wong and his wife Hun Shiew Young, both 41 and educators, found out about their son’s condition when they had observed that he kept losing weight despite eating and drinking a lot more. He also complained of pain in the mouth.

They also have a nine-year-old daughter and a three-year-old son. Both children do not have the condition.

They took Joshua to see a dentist and a doctor, but his condition continued to worsen.

One day, he became very sleepy and slipped into unconsciousness. He was admitted to KK Women’s and Children’s Hospital (KKH) and diagnosed with diabetic ketoacidosis, common among people with Type 1 diabetes. It can be dangerous, even life-threatening, if untreated.

At KKH, about 1,400 children and adolescents have been diagnosed with diabetes since 1997. The majority of them have Type 1 diabetes, according to Professor Fabian Yap, head and senior consultant at its Department of Paediatrics’ Endocrinology Service.

The overall prevalence of Type 1 diabetes is low and estimated at less than 5 per cent of all those with diabetes in Singapore, says Dr Daphne Gardner, senior consultant in endocrinology at Singapore General Hospital.

But it remains important to address the specific needs for managing this condition well and also raise public awareness.

In Type 1 diabetes, the pancreas stops producing insulin and lifelong insulin replacement – via injections or an insulin pump – is needed for survival. Without insulin, one can quickly feel very unwell and end up in hospital, so the condition has to be taken seriously, Dr Gardner adds.

Joshua has been carrying a pump to deliver the insulin that he lacks and wears a glucose-monitoring sensor on the back of his upper arm.

“Sometimes, he would ask when he can stop using these devices, and imagines that he can be free from them one day,” Mr Wong says.

It did not help that a classmate saw the devices on Joshua and teased him: “Are you a robot?”

He is sharing his family’s experiences so that people will be more compassionate to those with the condition.

He is also thankful for efforts such as the picture book, My Name Is Adam. I Have Type 1 Diabetes. The story follows a 10-year-old boy who attempts to adjust to life following his diagnosis.

While the character is fictional, the content is drawn from real-life experiences shared by Singapore families who have loved ones with Type 1 diabetes.

Its authors Candy Gan, 25, and Yeo Cheng Yong, 33, have also been living with the condition since they were aged two and 20 respectively.

Gan says some 3,000 copies have been distributed to schools, public libraries, hospitals, clinics and non-profit organisations.

The story makes a good conversation starter for parents and educators to talk about Type 1 diabetes with kids. Joshua’s Primary 1 teacher, for instance, read the book to his classmates.

Mr Wong says it is also a misconception that those with Type 1 diabetes cannot consume sugary food.

Joshua, in fact, gets to eat sweets, biscuits and ice cream more often than before the diagnosis. These help adjust his glucose level when it is too low.

The challenge for his parents is to figure out how much insulin to give to cover for the amount of carbohydrates in his food. To better manage the glucose level, the timing of food intake can also be important.

“Many times, Joshua had to wait before he could eat. We had to rationalise with him or distract his attention, such as by allowing him more screen time.”

Dr Gardner says those with Type 1 diabetes and their caregivers are among the most resilient individuals.

They have to apply that discipline and knowledge – before eating, drinking and even exercising – 24/7 for the rest of their lives.

“This is why their mental burden can sometimes become very overwhelming,” she says.

Mr Wong and his wife can relate to it. Their relationship broke down at least twice during the journey of caring for Joshua.

Despite their best efforts, they had made some wrong judgments, causing their son to be unwell.

When too much insulin is given, the glucose level may fall too low and there is immediate danger of becoming unconscious. Meanwhile, too little insulin leads to a high glucose level and may affect the body over time.

There are more than 40 factors affecting the glucose level, such as types of food and physical activity, stress, temperature and biological changes.

“The more we wanted to control it, the more frustrated and disappointed we got,” says Mr Wong.

But their marriage has come out stronger after a heart-to-heart talk with each other.

“Both husband and wife must have the courage to seek support from others, especially the emotional aspect,” he says. “If we cannot take good care of ourselves, how do we take good care of our children?”

He is heartened that Joshua is self-disciplined and proactive in managing his condition. For instance, whenever he feels dizzy – a sign of low glucose level – he will approach his teachers to let him take sweets.

Mr Wong reassures Joshua that he is as normal as other children.

He says: “It is just that he needs external devices to support him for food intake. It is similar to those who wear spectacles to support their eyesight.”