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EspañolWhat is EDS?
Your body holds together thanks to a kind of glue called collagen. In your body, this glue is stretchier than in other people’s. That’s why you’re very bendy, and why you can get hurt or bruised more easily.
Children & teens
The kids’ corner just for you
Are you between 6 and 12? Here, we explain your illness in simple words. You can read on your own or with a grown-up.
Understanding my illness
What is gastroparesis?
Your stomach mixes what you eat, then sends it further along inside your tummy. In your body, it works in slow motion, like a snail. So you can get tummy aches, feel sick or feel full very quickly.
Your energy battery
Your body has a battery, like a tablet. Yours isn’t always full, even in the morning, and it runs down faster: walking, learning or being in pain all use up energy. Rest recharges it a little, but not always all the way. That’s not being lazy! When your battery is nearly empty or you’re in pain, tell a grown-up: your parents, your teacher, the school nurse.
Why do my joints pop out?
Your bones are joined by a kind of elastic band: the ligaments. With EDS, these elastic bands are too stretchy. Your joint moves too much and can slip out of place, then go back: that’s a dislocation, and it hurts. The physio helps you make your muscles stronger so they hold your joints better.
Why does my head spin when I stand up?
When you stand up, your blood tends to go down into your legs, like water at the bottom of a bottle. There’s less left for your head: it spins, your vision goes blurry or you feel hot. Your heart beats very fast to push the blood back up. Get up slowly, drink water regularly, and sit down as soon as it starts.
For the youngest (ages 0-6)
Sophie’s story (in French)
An interactive story to read with a grown-up: Sophie explains EDS and gastroparesis through little games. The story is in French; press “Écouter” to hear it read aloud.
Open the story full size ↗ FRMy helper box
Some children use aids to help their body feel more comfortable. Tap a card to turn it over and find out what it’s for!
How do I feel today?
Tap the weather that looks like how you feel. There’s no right or wrong answer!
Sunshine: I feel good
Great! Enjoy this lovely day. Still remember to take breaks to keep some energy.
Sunny spells: I’m OK, a bit tired
You’re OK, but your battery isn’t full. Take your time and rest when you need to.
Clouds: not great
It’s not a great day. You can tell a grown-up, even if you can’t really explain why.
Rain: I’m in pain or I’m sad
It’s OK to be in pain and to feel sad. Tell a grown-up: they can help you feel better.
Storm: I’m not OK at all
Go and see a grown-up straight away and show them this weather. Asking for help is brave!
My games
Two games to understand illnesses you can’t see, and learn how to help your friends.
Ages 4 to 10, with an adult
All different, all friends (in French)
Six children are waiting for you in the park. Some disabilities can be seen, others not at all. Tap each child to discover them and learn how to help.
Open the game full size ↗ FR
Ages 6 to 14, alone or in class
Sophie’s 10 spoons (in French)
Sophie has 10 spoons of energy for her whole day. Every choice costs her some: help her make it to the evening, and understand why tiredness can’t be seen.
Open the game full size ↗ FR
