Posted 15 December 2023

Anna takes action
Anna Johnston

“I’ve got it, haven’t I?”

That’s what then 11-year-old Anna said to the hospital emergency team when she visited following a worrying rise in her blood glucose levels.

The ‘it’ Anna was referring to was type 1 diabetes. Anna’s oldest brother Max, now 20, had also been diagnosed with type 1 diabetes when he was 11. Their mum, Sarah Jane, said, “When Anna was diagnosed, I experienced sadness, because I see it as a lifelong condition.”

Within 100 days of her diagnosis, Anna had put her hand up for SVI’s BANDIT trial, because, as she said, “I never want my grandbabies to go through this.”

Anna’s type 1 diabetes was caught very early on, as Sarah Jane had enrolled Anna and her two brothers in a risk screening study, which led to the discovery that she had antibodies linked to increased risk of developing the condition. While there is a genetic risk of type 1 diabetes, her other brother Harry, who is 18, does not have any of the antibodies.

Sarah Jane describes the BANDIT study as ‘intensive’ and while they don’t know yet if Anna was on the trial drug, baricitinib, or a placebo, she said one benefit of being on the trial was that it provided them with more medical support.

“When Max was diagnosed, we felt like a fish out of water,” she said.

The trial follow up will continue for the rest of 2024. Anna’s 13 now, and on a very low dose of insulin.

“She doesn’t have the wide variances in blood glucose levels that her brother had,” Sarah Jane said. “Even so, some nights are tough, and she has to have sugar to raise her glucose levels.”

Sarah Jane is philosophical about type 1 diabetes research, saying, “I think a treatment and potential cure has been coming for such a long time. I know that it takes money to support type 1 diabetes research, and that if it doesn’t affect you, it’s not everybody’s cup of tea.

“While we wish a treatment to prevent or slow down the progression of the condition was further down the line, we’re glad Anna had the opportunity to potentially change someone else’s future experience with type 1 diabetes.

“I’m grateful that SVI’s researchers aren’t giving up.”