English
Italiano
Deutsch
EspañolEDS
Several EDS centres see children and teens: Paris (Necker), Angers, Caen, Poitiers, Tours, Ramonville near Toulouse, as well as Clermont-Ferrand, Marseille, Montpellier, Perpignan and Réunion, which see both children and adults.
EDS centres
Children & teens
Parents’ space supporting your child
Guidance to recognise the signs, find the right people to talk to and organise life at school and at home.
When should you talk to the doctor?
Children are naturally more flexible than adults: being very flexible, on its own, is nothing to worry about. It is mainly the signs that get in the way of the child’s life, and that keep coming back, that should be reported to the paediatrician or GP:
- repeated sprains, dislocations or joints “popping out”;
- frequent pain that limits play, sport or school;
- unusual tiredness that does not go away with rest;
- easy bruising, very thin skin or scars that widen;
- nausea, vomiting, constipation or tummy pain that persists, or a child who is not growing or gaining weight as expected;
- fainting spells or dizziness when standing.
Who to turn to?
The paediatrician or GP remains the first point of contact: they coordinate care and refer to specialists if needed.
Digestive problems
A paediatric gastroenterologist investigates vomiting, stomach emptying and bowel transit. Severe forms, such as intestinal pseudo-obstruction, are followed in the centres of the FIMATHO network.
GastroparesisFeeling faint when standing
POTS often starts in adolescence. In 12 to 19-year-olds, the threshold is a rise in heart rate of at least 40 beats per minute when standing. A paediatric cardiologist or neurologist can confirm the diagnosis.
POTSAutism and ADHD
They are more common in people with EDS or hypermobility. For a child, the doctor can refer to a coordination and guidance platform for neurodevelopmental disorders.
Autism and ADHDPain
A child may play down their pain or show it differently (withdrawing, refusing an activity). Specialist paediatric pain clinics exist in many hospitals.
Rehabilitation
Physiotherapy, occupational therapy or psychomotor therapy help stabilise the joints, improve body awareness and keep confidence in movement.
Living with EDS and getting care
These schemes apply to France. In another country, contact the school or write to us to find the right contact.At school, adjustments are possible
The aim: for the illness to weigh as little as possible on learning and classroom life. Several schemes exist, depending on needs.
PAI
The PAI (individual care plan) is drawn up with the school doctor at the family’s request, without going through the MDPH. It sets out treatments, dietary needs and what to do in case of feeling unwell or a crisis.
Learn more ↗PPS and AESH
The PPS (personalised schooling plan), decided by the MDPH, can provide a support assistant (AESH), adapted equipment (a computer, for example) or school transport.
Learn more ↗PAP
For ADHD or learning disorders, the PAP (personalised support plan) sets out teaching adjustments, without going through the MDPH.
Learn more ↗Exams
For the brevet, the bac or competitive exams: extra time, breaks, a separate room, a computer… The request is made to the designated doctor, as early as possible in the year.
PE at school
Rather than a full exemption, a certificate of partial unfitness often makes it possible to adapt PE: avoiding jumps or contact, shortening sessions, keeping a place in the group.
Long absences
In case of hospital stays or repeated absences, APADHE provides lessons at home or in hospital. Distance learning (CNED) is also possible in some situations.
Learn more ↗Finding your rhythm
Moving, but adapted
Physical activity remains beneficial. The national protocol advises avoiding competition, heavy lifting and contact or pivoting sports, and favouring regular, supervised activity (swimming, cycling, walking…).
Eating and growing
With gastroparesis or digestive disorders, weight and height are closely monitored. A dietitian helps adapt meals; tube feeding is sometimes needed to protect growth.
DietManaging energy
School days are tiring. Planning quiet times, spreading out activities and accepting “off” days helps avoid exhaustion.
Managing your energyBrothers and sisters
They may feel left out or worried. Explaining the illness to them simply and keeping time just for them means a lot.
You are not alone
Medical appointments, tests, contact with the school: supporting a sick child takes a lot of energy. Believing what your child says, keeping track of their symptoms and preparing appointments together helps them feel heard.
- AEEH: an allowance to help with the costs of a disabled child under 20, applied for through the MDPH. Find out more ↗
- AJPP: the daily parental presence allowance lets you stop working to care for a seriously ill child (up to 22 days a month), applied for through the CAF or MSA. Find out more ↗
Questions parents ask
Should I tell my child the name of their illness?
Yes, in words suited to their age. A child who doesn’t know what they have often imagines worse than reality, or thinks it’s their fault. Our kids’ corner, written for them, can help you explain.
Can my illness be passed on to my child?
Some types of EDS run in families, others don’t: it depends on the type. A geneticist can explain the risks and, if needed, offer a genetic test.
The school doesn’t take the illness seriously. What can I do?
Ask for a meeting with the school doctor or nurse, bring a letter from the doctor who follows your child, and request an individual care plan (PAI). Our school sheet can also be given to teachers.
If things stay stuck, write to us: we can help you find the right people to talk to.
Can my child keep doing sport?
Yes, and it’s even recommended, choosing a gentle, regular activity. Talk to the doctor and the physiotherapist, who can advise on the most suitable sports.
I feel overwhelmed. Who can I turn to?
It’s normal to feel exhausted at times. Maladies Rares Info Services (France) listens free of charge on 0 800 40 40 43, and our meetings let you talk with other parents going through the same thing.
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.