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28th January 2020

Meet the “go-to” mum for Type 1 diabetes support

One phone call from her daughter’s school changed Csilla’s life forever.

“The school said that my little girl was feeling ill, so I quickly finished a couple of things at work and rushed to the doctor with my daughter,” says Csilla, a mum and former landscape architect from Hungary. “I had no idea that it would be my last day in my job.” It was soon confirmed that her three-and-a-half-year-old daughter, Judit had Type 1 diabetes (T1D), meaning her body couldn’t produce enough insulin, a hormone that controls blood sugar (glucose).

According to the International Diabetes Federation, more than 1.1 million children and adolescents are living with T1D. The disease usually develops in children or young adults, although it can affect people at any age. The lives of those with T1D depend on insulin and they need daily injections of it to control their blood glucose levels.

“On the day of the diagnosis, I found myself at a children’s hospital surrounded by very knowledgeable but overwhelmed medical personnel lacking the time to explain everything in detail to the parents and to give them the psychological support they needed,” Csilla tells This Is MedTech. “The more experienced parents started explaining the most important practical aspects of family life with diabetes to the other parents. That was the first time I realised there was a need to provide additional guidance to the parents of newly diagnosed children – not only about the technicalities of the insulin treatment, the proper diet and the importance of sport – but mainly regarding the necessary mental and emotional process following this life-changing event as well as hands-on advice how to adjust their everyday life to this completely new situation.”

This unmet need prompted Csilla to open Szurikáta Alapítvány, an organisation that helps parents and their children after a diabetes diagnosis to adapt to their new way of life. In hindsight, she considers herself lucky that although Judit was diagnosed with serious symptoms, it was still in time before her condition would have reached a life-threatening level. “Even though the initial symptoms are common – frequent urination including at night, feeling continuously thirsty, weight loss and fatigue – many children get into hospital too late and in a very serious condition due to misdiagnosis and delayed treatment,” she says. “Therefore, the first action the foundation launched was a nationwide campaign to raise awareness about detecting already the mild symptoms and the importance of early diagnosis through posters distributed to paediatric waiting rooms, nurseries, kindergartens and schools.”

After the first couple of weeks of transition most kids with T1D are eager to go back to school and pick up their lives where they have left off. “Medical technologies like insulin pens and pumps, injection ports, non-invasive continuous glucose monitoring devices and ketone meters provide enormous support not only to the kids to improve their quality of life, but also to ensure the parents that their kids are safe with their continuous diabetes management system,” Csilla explains.

“However, despite being supported by medical technology, there are further challenges that T1D families face,” she adds. Confronting the fears and misbeliefs of teachers, parent peers and other children, Csilla understood the value of accurate information. “I’m determined to provide education in many different forms targeting various audiences and covering a wide range of aspects of life with T1D.”

Szurikáta Alapítvány’s most recent initiative is the publication of a children’s book sharing knowledge about diabetes and providing psychological support embedded into a fairy tale. The foundation also gives regular interactive workshops with the help of volunteering medical students and dietitians for school groups with diabetic kids, organises an annual family day and has a hands-on training programme for teachers working with T1D children.

Being a “Type 1 mum” is how Csilla identifies herself these days, but her self-education efforts have grown into an ambitious mission to support all Hungarian children with diabetes as well as their families.