For World Diabetes Day we caught up with the Amos family who have two sons, Stephen and Andrew, living with type 1 diabetes.

Type 1 diabetes is one of the most common chronic diseases in children. It is a life-long autoimmune disease that usually occurs in childhood but can be diagnosed at any age and affects more than 122,000 Australians.

Society frequently confuses type 1 diabetes with type 2 diabetes. The key difference being that type 1 diabetes is in no way related to lifestyle factors, it is caused by the immune system mistakenly turning on itself, destroying beta cells within the pancreas and removing the body’s ability to produce insulin, which allows the body to process sugar to create energy – without insulin, the body literally starves as it cannot process food.

Although people with type 1 diabetes can appear completely healthy, the disease is extremely serious and impacts the everyday life of those living with it and their families.

When Stephen Amos was just five-years-old his parents noticed he was fatigued, losing weight and was thirsty and urinating more often than usual. When Stephen’s mum Vivian took him to their local GP, his Blood Glucose Level (BGL) tested well above the normal range and he was sent to The Royal Children’s Hospital (RCH). When Stephen got to the RCH his BGL was dangerously high, too high in fact for the monitor to even read, meaning it was somewhere over 30 mmol/L (the normal range is 4 to 8 mmol/L). He was then diagnosed with type 1 diabetes and received urgent treatment to bring his BGL down. The effects of a high BGL, known as hyperglycaemia, can be extremely serious and can lead to permanent organ and nerve damage and even a diabetic coma.

Stephen’s mum Vivian said the diagnoses was a shock and the initial days in hospital learning how to manage BGL and inject their little boy with life-saving insulin four times daily was overwhelming.

“We didn’t really know what we were in for until we got home from hospital. I remember the first thing I did when I got home was look for a safe place for all the supplies we now needed – needles, syringes, testing strips, the sharps container and more – and it was then that it hit me, this is for the rest of our life,” Vivian said.

“Initially, I didn’t know how we’d get through it, but most importantly I wanted to make sure Stephen knew that he could do whatever he wanted to do, despite this disease. I never wanted him to feel as helpless and afraid as I felt in those initial weeks after his diagnosis, so we got it together, we got organised and eventually we learnt how to live with it.”

One year later, almost to the day, the Amos family discovered that their older boy Andrew also had type 1 diabetes, he was ten-years-old when he was diagnosed. Although the boys don’t remember much from those early years, Stephen said that the family was devastated by Andrew’s diagnosis, as they knew what lay ahead, but in some ways it helped to know that the two brothers could support and understand each other.

“Andrew’s diagnosis meant that we were now living with the same battles. It some ways that normalised things a little, and we were able to help each other deal with it,” Stephen said.

For at least the next five years while the boys were still little, Vivian and her husband Neil would take it in turns of getting up every two hours, every night, to check their sons’ BGL and ensure they weren’t hypoglycaemic (meaning low BGL – a common and dangerous condition for many people with type 1 diabetes, which can be caused by eating less than usual, more exercise than normal or when too much insulin is administered). It is a constant battle for people with type 1 diabetes to keep their BGL balanced. Prior to diagnoses or when another illness or infection strikes someone with type 1 diabetes, hyperglycaemia and diabetic ketoacidosis (a build up of acids in the bloodstream) are also serious risks.

“When the boys were younger we were up every night checking, because the risk of not checking can be life-threatening. On any average night their BGL could drop, and when they’re unwell they could either drop or rise dangerously, and either means they could slip into a coma in their sleep. Type 1 diabetes never gives you a day or a night off, it is always there.”

On top of the everyday risks, those with type 1 diabetes live with the constant threat of long term complications, which include eye disease, nerve damage, kidney disease, heart disease and stroke amongst others, not easy for any young person to comprehend or have to consider.

For Stephen, growing up with type 1 diabetes was at times also difficult socially. “As a teenager you’re more self-conscious and you care about what other people think. If I’m doing a finger prick test or giving myself insulin around other people, you never know what they’re thinking,” he said.

Despite the challenges, Stephen wants other young people with type 1 diabetes to know that you can still do everything you want to do, a message his parents instilled in him and his brother Andrew early on.

“In April this year I returned from a school trip where we visited seven countries in just over a month and recently I performed in front of thousands of people at The Victorian State School Spectacular. At the moment I’m right in the middle of my Year 11 exams and when I finish school I hope to study and work in music or the media.”

“Yes, having type 1 diabetes is a daily challenge, but it’s something I’ve had to learn to live with, and I won’t let it stop me from doing everything I want to do in life and more.”

The ultimate hope for the millions of children and adults around the world with type 1 diabetes is for a life without the disease – the hope for a cure.

The Royal Children’s Hospital Department of Endocrinology and Diabetes is fortunate to be involved in a range of studies and clinical trials to improve quality of life and clinical outcomes for those with type 1 diabetes. Some of the recent studies have included:

• Understanding the functional impact of hypo- and hyperglycaemia on cognition and the developing brain
• The internationally collaborative Adolescent Type 1 Diabetes Intervention Trial (AdDIT) – a renal protective study
• Optimising the impact of diabetes-related technologies, including:
  • Predictive Low Glucose Management studies (the next generation insulin pump technology)
  • Neurocognitive impact regarding the  use of an insulin pump compared to injected insulin
• The effects of a type 1 diabetes patient’s transition to the adult healthcare setting
• The impacts of insulin pump therapy on brain function

For more information, you can visit the Endocrinology and Diabetes Department page on the RCH website at: http://www.rch.org.au/endo/