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Living with juvenile diabetes a constant learning curve
At just six-and-a-half years old, life changed drastically for Marti Demo.
The normally affectionate and active child was inexplicably losing weight, sleeping all the time, and refusing to be touched.
“The way she described it was, ‘everything hurt’,” recalled her mom, Jennifer Demo.
When she wasn’t at school, Marti was at home in bed. She even started passing out on school field trips.
“We were at the museum, they were reading us a story and I fell asleep on the carpet,” she said.
One visit to the doctor was all it took for the diagnosis: Marti, then 7, had Type 1 diabetes, formerly known as juvenile diabetes.
“He sort of sniffed at her and said ‘she’s a diabetic, I can tell from here’,” Jennifer said. “Because we live with her, we didn’t notice it.”
Tests confirmed the diagnosis and revealed that Marti’s ketone levels were dangerously high and she was rushed to Nanaimo Regional General Hospital emergency. It took hospital staff about 18 attempts to start an IV on Marti, who had become severely dehydrated.
Type 1 diabetes is an auto-immune disorder that occurs when the beta cells on the pancreas are dead or do not produce enough insulin to regulate carbohydrate and fat metabolism in the body. Without the insulin, the body produces ketones, which start to consume the cells around it, such as lean muscle and stored fat. In high levels they are particularly toxic.
For Marti and her family, it meant adopting a whole new lifestyle, and relearning everything they thought they knew about eating. Instead of spontaneous birthday parties, goodies and eating whenever and wherever, it meant continuous label reading and calculating, in addition to constant monitoring of insulin and blood sugar levels; three injections a day and blood tests from five to eight times a day.
“It was hard... All my friends [at school] would have these big bags of popcorn, eating them and I would be sitting there with nothing,” Marti said.
When ill at school, she would get pulled out of class until her mom or dad could come to the school to administer her medication.
This week marks the fifth year since Marti was diagnosed. Until a cure is found, she will have diabetes for the rest of her life, but she hasn’t let that get her down. The 12-year-old is currently on her school’s volleyball team, enjoys participating in other sports, and spends plenty of time hanging out with friends and playing the saxophone.
Though she now wears an insulin pump, which directly infuses insulin to her body, she still has to be very careful about her blood sugar levels, which can cause symptoms like dizziness, hyperness, hallucinations and passing out.
Marti is a local ambassador for diabetes, giving talks in the community about her experiences and participating in the Telus Walk to Cure Diabetes, which her mom helps co-chair. She sometimes provides counseling to newly diagnosed children.
Her advice: “It’s not as hard as it sounds – it’s actually quite easy to get used to it.”
According to Rita Thodos, National Director of field operations for Juvenile Diabetes Research Foundation Canada, there are approximately 300,000 Canadians living with Type 1 diabetes. There has been a shift from its former name, juvenile diabetes, as the disorder is being discovered in more and more adults.
While there can be genetic predisposition to Type 1 diabetes, its exact cause isn’t known. It differs greatly from Type 2 diabetes, which is usually caused by genetics and lifestyle choices. Type 2 diabetes occurs when the body develops a resistance to insulin, and can be controlled by diet and exercise.
“It’s a metabolic disorder, so people who live with Type 2 diabetes, their body still produces insulin, but they’re not able to use it as effectively,” Thodos said. “It’s usually managed either by diet and exercise or with prescription medication, instead of insulin.”
Diabetes [Type 1 and 2] is on the rise, Thodos said. In Canada, more than 20 people are diagnosed with diabetes every hour.
Since its founding, JDRF has raised about $1.6 billion dollars for juvenile diabetes research.
The JDRF’s prize accomplishment is their Canadian Clinical Trial Network, a partnership with the federal government. There are currently nine clinical trials operating in Canada, and 50 clinical research studies taking place internationally in 18 countries.
“We’ve seen advancements in our cure therapies, which helps to restore a person’s insulin producing capabilities, and treatment therapies such as devices that help people manage diabetes and avoid serious complications,” Thodos said.
“One of the things we’re working on right now in collaboration with various scientists is an artificial pancreas, and what the outcome of that will be is dramatically improved treatment by helping to regulate blood sugars without manual intervention.”
For more information, please visit www.jdrf.ca.