How to explain Type 1 Diabetes to your child

"Why me?" "Will it go away?" "Did I eat too many sweets?" If your child has just been diagnosed with Type 1 Diabetes, you've probably heard questions like these. Here's how we explain it in our house, and in the Captain Lantus stories.

Start with what insulin does

Every body runs on energy from food. When we eat, food is broken down into sugar (glucose), which travels around the body in the blood. Insulin is like a key that unlocks the body's cells so the sugar can get in and be used for energy.

In Beta Town, we describe insulin as the power inside the Insulin Cube. Without it, the town's energy can't get where it needs to go.

Then explain what's different with Type 1

In Type 1 Diabetes, the body's immune system, which normally fights germs, gets confused and stops the pancreas making insulin. Without insulin, sugar builds up in the blood instead of getting into the cells.

That's why children with Type 1 need to take insulin, through injections or an insulin pump, every single day. The insulin they take does the job their body can't.

Say this clearly: it isn't anyone's fault

Children often worry they caused their diabetes. It's important they hear, again and again:

• Type 1 is not caused by eating sweets or sugary food.
• It's not caused by anything they or you did.
• You can't catch it from someone else, and friends can't catch it from them.
• It's not something anyone could have prevented.

Use stories and characters

Young children understand the world through stories. That's why we turned Max's diagnosis into Captain Lantus. In the books, King Carb and his Carbanites want to steal the Insulin Cube, and Captain Lantus uses his insulin pump to protect it. In our newest book, the villain T1D throws red energy (high blood sugars) and blue energy (low blood sugars), which gives children simple words for how they feel.

You don't need our books to do this. Any favourite hero, toy or story can help your child picture what's happening in their body.

Keep it age-appropriate

• Under 5s: keep it simple. "Your body needs some help with energy, and insulin is your helper."
• 5 to 8: introduce the key idea and the pancreas, and let them hold and look at their kit.
• 9 and over: talk about carbs, how activity and illness affect blood sugar, and let them take small steps in managing it with you.

Let them be the expert

One of the best things we did was let Max explain his diabetes to others. Explaining it to a grandparent, a friend or a class helps a child feel proud rather than different. As Max says: "Being Captain Lantus means showing kids like me that we are already superheroes."

Free guides to help

Our free illustrated guides What Is Type 1 Diabetes? and Newly Diagnosed Hero use the Beta Town story to explain all of this, page by page, with Captain Lantus, Mayor Bolus and friends.

Please note: this article is general information written by a parent, not medical advice. Always follow the plan and advice of your child's diabetes team.

Gary RapsonMax's dad and the author of the Captain Lantus books. Max was diagnosed with Type 1 at 18 months old.