Growing up with a chronic illness

EDS, gastroparesis, POTS or digestive disorders can appear in childhood. Guidance for parents, a corner just for children, and advice for teens.

Who are you?

Choose your space: each one is written for you.

I’m a parent

Spotting the signs, getting referred, school, financial help.

Parents’ space

I’m between 6 and 12

Understand your illness in simple words.

The kids’ corner

I’m a teen

Your care, school, friends, how you feel.

Teens’ space

For grandparents

A kit to help grandparents and older people understand EDS and gastroparesis, with simple words and little games to play together (in French).

Understanding and helping EDS and gastroparesis explained simply, and 4 ways to help your grandchild or a loved one.

PDF · 495 KB ↗

The 10 spoons game A sheet of spoons to cut out and the facilitator’s guide, to understand fatigue in 15 minutes.

PDF · 559 KB ↗

True or false quiz 6 cards to show and their answers, for a 10-minute quiz with the family or in a group.

PDF · 2.5 MB ↗

The complete kit All three parts in a single document, ready to print.

PDF · 4.4 MB ↗

Sources and resources

HAS National diagnosis and care protocol: non-vascular EDS (2020, in French) ↗ HAS National protocol: chronic intestinal pseudo-obstruction in children (2021, in French) ↗ Mon Parcours Handicap Schooling: PAI, PAP, PPS, AESH, adjustments (in French) ↗ FIMATHO French network for rare abdominal and thoracic diseases (in French) ↗ Maladies Rares Info Services Free listening and guidance service: 0 800 40 40 43 (France) ↗ Fil Santé Jeunes Anonymous listening line for ages 12-25 (France): 0 800 235 236 ↗

Important information

This page gives general guidance. It does not replace the advice of the paediatrician or specialists who follow your child, nor that of the school doctor or the MDPH.

Parents, teens: let’s talk

Other families are going through the same thing. Our meet-ups are open to members and their loved ones: a great way to share tips and experiences.

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