The basics

What is Type One Diabetes?

A plain-English guide from a family who had to learn all of this very quickly. If you're new to T1D, this is the page we wish we'd had.

In a nutshell

When we eat, our body turns food (especially carbohydrates) into glucose, a type of sugar that goes into the blood and gives us energy. To move that glucose out of the blood and into the cells that need it, the body uses a hormone called insulin, which is made by the pancreas.

In Type One Diabetes, the body's immune system attacks and destroys the cells in the pancreas that make insulin. Without insulin, glucose builds up in the blood while the body's cells are starved of energy. It's an autoimmune condition: it isn't caused by diet, lifestyle or anything a parent did or didn't do, and it can't currently be prevented or cured.

That means everyone with T1D needs insulin, every day, for life, either through injections or an insulin pump.

Type 1 vs Type 2

They share a name, but they're very different conditions.

Type 1

The body stops making insulin because the immune system has destroyed the cells that produce it. It often starts in childhood but can appear at any age. It isn't linked to lifestyle, and insulin is always needed.

Type 2

The body still makes insulin, but either not enough or it doesn't work properly. It's far more common, usually develops in adults, and can be linked to things like weight and genetics. It's often managed with lifestyle changes and tablets, at least to start with.

The signs: the 4 Ts

Type One Diabetes can come on quickly, over days or weeks. Diabetes UK's 4 Ts campaign sums up the main warning signs:

T
ToiletGoing to the toilet a lot, wetting the bed, or much heavier nappies
T
ThirstyBeing really thirsty and not able to quench it
T
TiredFeeling more tired than usual
T
ThinnerLosing weight, or looking thinner than usual

If you spot these signs in a child, get them seen the same day. A simple finger-prick blood test can check for diabetes. Don't wait for it to get worse. Babies and toddlers can't tell you they're thirsty or tired, which is exactly why it gets missed in little ones like Kylo.

What is DKA?

DKA (diabetic ketoacidosis) happens when there isn't enough insulin in the body. Unable to use glucose for energy, the body starts breaking down fat instead, which produces chemicals called ketones. As ketones build up, the blood becomes acidic, and that's a medical emergency.

Signs of DKA can include being sick, tummy pain, fast or deep breathing, breath that smells fruity (a bit like pear drops), and becoming very drowsy or confused. It can happen before someone is diagnosed, which is what happened to Kylo, or later on if insulin isn't getting in, for example when a pump site fails.

Highs and lows

Living with T1D means constantly trying to keep blood glucose in a target range. In the UK, blood glucose is measured in mmol/L.

Hypo (low)

When blood glucose drops too low, usually below 4 mmol/L. It can cause shakiness, sweating, paleness, grumpiness and confusion, and it needs treating straight away with fast-acting sugar. Toddlers can't tell you they feel low, so we rely on the tech and on watching him closely.

Hyper (high)

When blood glucose is too high. It can cause thirst, needing the toilet and tiredness. Lots of highs over time aren't good for the body, and very high levels with ketones can lead to DKA. When Kylo's ill, we follow our sick day rules.

How it's managed

Managing T1D is a 24/7 job, and for a toddler, the grown-ups do all of it. Here's the kit and the jobs that make up a normal day for us:

Insulin pump

A small device that delivers insulin all day through a tiny tube under the skin. The site gets changed every few days.

Insulin pens

Injections of insulin, used instead of a pump or as a back-up when the pump isn't working.

CGM sensor

A continuous glucose monitor sits on the skin and reads glucose levels every few minutes, sending them to a phone, so we can see what's happening day and night.

Carb counting

Working out how many grams of carbohydrate are in every meal and snack, so the right amount of insulin can be given. Our carb calculator helps with homemade recipes.

On top of that, illness, growth spurts, activity, heat and even excitement can all send numbers up or down. Our calendar keeps track of when everything needs changing.

Useful links

These are the organisations we've found most helpful. They explain all of this in much more depth.

We're a family sharing what we've learned, not medical professionals. If you're worried about yourself or your child, speak to your GP, call NHS 111, or in an emergency call 999.