KAILAN - Portraits of Diabetes

KAILAN

Type 1 diabetes-diagnosed 2006

I have my friends to help me. I'm worried financially about being an adult with diabetes but not otherwise.

Kailan Siegel sits with her mom Christine discussing her future. Ten years ago, Kailan had her photo taken for the grand opening of the Alberta Diabetes Institute at the University of Alberta on World Diabetes Day, November 14. Then, she was six years old and her mom was managing her diabetes with insulin injections and glucose monitoring day and night.

Now, she's having her photo taken again-this time to celebrate the 10 year milestone-and a lot has changed in her life. At 16, she will soon have to navigate her diabetes management on her own with less support from her mom and even the health-care system. Next year, she'll move from pediatric care to the adult system, where there is far more responsibility placed on the patient.

It's a move that weighs heavily on Christine's mind, as she knows the difficulty of managing the disease. There have been times when she's had to give Kailan a needle in the middle of the night without her daughter even waking up. While Kailan usually sleeps through those moments, she does remember when she first started receiving insulin injections. For the first three months, she had to be pinned down for each needle.

"I remember hiding under my bed," says Kailan, who has never really overcome that fear of needles.

When Kailan was diagnosed at the age of four, her mom realized she had already been worrying subconsciously about the diagnosis for years. Christine recalls a recurring dream she had as a child, in which she was being held down and someone was giving her needles. But the day when she walked into Kailan's pediatric room and recognized it as the setting of her childhood dream, she realized it had actually been about Kailan.

Because of those dreams, today she believes that the deep concern for Kailan that consumes her daily life now was hard-wired into her subconscious even before she gave birth to her. And while Kailan may be scared of the needles, Christine is more afraid of what they symbolize-the constant vigilance needed to ensure her daughter's health.

Kailan is now on an insulin pump, a device that delivers basal insulin continuously to maintain blood glucose levels between meals. The pump can also be programmed to dispense a larger amount of insulin during meal times as needed. This form of treatment is generally considered more precise than insulin injections, but still requires a lot of monitoring and adjustments to perform properly.

But Kailan is confident she can manage it, especially with the support of friends with diabetes she's met through summer camps. "The friends I have-one goes to a different school-she'll text me every time at lunch asking what are my sugars and did I check. So I have my friends to help me. I'm worried financially [about being an adult with diabetes] but not otherwise," Kailan says.

"What about site changes?" asks her mom, referring to the small needle attached to an insulin pump that needs changing every few days.

"There is that one," admits Kailan.

"How about trying to figure out the pump on your own?"

"Doctor," comes her immediate response.

"I'm worried now," says Christine, "because a girl who was diagnosed close to the same day as she was-she's an adult now and she's been hospitalized twice because she doesn't take care of things and it's minimal support. I've heard through the adult clinic." And she has other stories-another young adult is in early-stage kidney failure, and another's blood-sugar levels are erratic due to infrequent doctor visits.

Despite the challenges that will come with managing her diabetes independently as she becomes an adult, Kailan is excited about the idea of starting university in a few years. Currently, her interest is in the field of kinesiology, and she anticipates she will remain in the province while studying so she can continue being insured for her pump through the Alberta government.

The Alberta Diabetes Institute researchers are deciphering the mechanisms leading to secondary diseases with a focus on developing clinical treatments to reduce diabetes-related complications.

Photography: Richard Siemens Writer: Caroline Barlott Editor: Sasha Roeder Mah Creative Director: MJ Fell