Alex was 11 when his world changed forever; little Abbie was just five.
Diagnosed with type 1 diabetes, an auto-immune disease when the pancreas loses the ability to make insulin, Alex and Abbie must endure up to eight finger pricks a day, all foods consumed must be weighed and measured, and then there are the needles; all necessary to avoid a diabetic coma. But there are also other battles to be withstood by both the children and their families living with this lifelong disease - school, social life and stigma.
Often confused with type 2 diabetes, type 1 is not a result of bad dietary or lifestyle choices, but still the stigma seems to stick. “Type 1 diabetes has nothing to do with lifestyle,” confirms Trish Egan, Head of Communications at Australian Diabetes Council. “The exact cause of type 1 diabetes is unknown however there can be a family link. It only occurs when something like a viral infection triggers the immune system to destroy insulin-making cells in the pancreas. This is called an autoimmune reaction and is the main way in which type 1 diabetes differs from type 2 diabetes.”
This frequently made mix-up is a big frustration faced by Abbie’s mum, Heidi. “Unfortunately, more often than not, current affairs programs report using the word ‘diabetes’, and then continue to show images of overweight people eating fast food. It is not difficult to add two words to these new reports – either Type 1 or Type 2,” she states, eager to ensure children living this with disease aren’t subject to unnecessary prejudice.
Susan, mother to Alex, recalls her own experiences with mis-information since his diagnosis. “Even my mum keeps saying he should be watching his diet, although he is underweight and over height for his age.” Susan also recounts a similar response of a friend whose young daughter had just been diagnosed: "But she is not fat," highlighting the unfortunate ignorance in the community.
This dietary misconception is never more apparent than at birthday parties. “One of my concerns for Abbie is that she is not excluded from birthday parties or events as a result of her diabetes. It can be managed, and special food does not need to be prepared,” explains Heidi. “People often assume Abbie cannot eat anything that contains high amounts of sugar.” But this is not so. As long as a parent monitors food consumed so as to maintain insulin levels a child need not miss out on the festivities.
Sadly though, a family’s social life can still be adversely affected when a child is diagnosed with Type 1 Diabetes. “We found friends were very hesitant to have anything to do with Alex for a while,” Susan laments. “Things like sleepovers and play-dates stopped. He had friends, including parents, who really did not know how to react around him.”
Thankfully, when Alex returned to school after a week-long stay at John Hunter Hospital, where he and his mother had to learn how to manage this disease, his classmates began to rally around him.
“One boy in particular, whose dad has diabetes, would stay with him while he did his finger pricks and injections during school time. These school friends were the ones that helped him through the adjustment, not our close friends.”
It’s at school though where many more quandaries for children with type 1 diabetes can present. While Susan has a management plan in place which has been mostly successful, Alex has still encountered issues.
“They went out on a run and didn’t give him time to do his finger prick,” Susan explains as an example. Alex’s blood sugar levels dropped very low, signalling he wasn’t getting enough insulin, which can result in a diabetic coma.
Like Susan, Heidi has concerns regarding schools and the management of this disease. “There is a great deal of confusion as to what a schools involvement is with diabetic care,” she says. “Of major concern is the grey area when it comes to the delivery of a lifesaving ‘glucagon’ injection given to a child if they suffer a severe hypo and become unconscious. Although it is mandatory that all teachers are trained on the delivery of an Epipen for anaphylaxis, this is not the case with glucagon.”
For Heidi though, her experience with Abbie’s school has been positive. “A Diabetic educator visited the school at the beginning of the year to educate all the teachers, and I spent further time with her kindy teacher and two teachers’ aides who all share the responsibility of Abbie’s care.” They’re also trained to be aware of the symptoms of low or high blood sugar and they ensure she maintains her blood sugar levels which brings much peace of mind to Heidi.
Even though life has changed dramatically since Alex and Abbie were diagnosed, their Mum’s offer these wise words to parents whose children have just been diagnosed.
“It will be okay!’” Heidi encourages, acknowledging that it’s the first weeks which are the most challenging. “You are dealing with the fact that your child has a chronic illness, needing daily management, and at the same time trying to absorb all of the reams of information you are receiving to keep them well. It’s tough, but with time and experience you do start to feel more confident.”
Susan also recommends parents build a support network by meeting other families with children who have type 1 diabetes. As well, she suggests contacting the Australian Diabetes Council (ADC) or Juvenile Diabetes Research Foundation (JDRF). The ADC, amongst other things, arrange camps for newly diagnosed kids so they can interact with others sharing the same life experience. JDRF is dedicated to finding a cure through fundraising campaigns such as JDRF Walk For A Cure held all over Australia during the month of October eacg year.
Finally, Heidi and Susan want to offer some comfort to those just embarking on the type 1 diabetes journey.
“I would give them a great big hug, and tell them that I wish it wasn’t so, but one day a scientist is going to kick Type 1 Diabetes butt!” Heidi says emphatically.
Susan couldn’t agree more; “There is life after diagnosis!”