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Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome is a genetic condition affecting the body's connective tissue. The skin, joints and blood vessels are more fragile or more flexible than usual, which can cause a great deal of pain and fatigue.

This can show up as:

  • very flexible joints that dislocate easily,
  • diffuse pain, present day to day,
  • significant chronic fatigue,
  • sometimes associated digestive or cardiovascular issues.

Being "very flexible" might seem like an asset. For people with Ehlers-Danlos, it mostly means a life of invisible pain.

Hypermobility, pain and fatigability; frequent sprains.

Possible accommodations

Orthoses, ergonomics, avoiding extreme movements.

Explanations based on your profile

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Ehlers-Danlos Syndrome explained to a Child

0–12 years old

Some people's bodies are built differently. Imagine the body is like a house: normally, the walls and the joints are solid and well attached. For people with Ehlers-Danlos syndrome, it's as if the "ropes" that hold everything together were too stretchy or too fragile.

This means that:

  • The joints (the knees, the elbows) bend way too easily, and sometimes it even hurts,
  • The body often hurts, everywhere, even when you haven't done anything tiring,
  • These people get tired very fast,
  • Sometimes, the tummy or the heart can have trouble too.

It's invisible: you can't see the pain from the outside, but it's really there. These people need help and rest more than others do. That's normal and it's not their fault.

Help others understand

Living with the Ehlers-Danlos Syndrome: the context set, the conversation freed.

You write your profile just once. At every new school year, every new team, every new caregiver, you share the QR code, no need to start over from scratch. The conversation continues, it just begins from a different point.

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