1. Ehlers-Danlos syndrome
Hypermobility Type

2. What is Ehlers-Danlos syndrome - hypermobility type (EDS-HT)?
There are lots of different types of EDS, but the most common type is the hypermobility type (EDS-HT).
Genetic condition – this means it runs in families
The ‘glue’ that holds the body together doesn’t work properly
Affects the WHOLE body!

3. What are the main symptoms of EDS-HT?
Bendy joints
Easy bruising
Stretchy skin
Feeling dizzy
Tummy problems
Feeling tired
Dislocations
PAIN!
EDS-HT is an INVISIBLE condition, so people with EDS-HT look completely normal!

4. Being “hypermobile” means you are bendy
A lot of the time, being bendy is good (like gymnasts and ballerinas) but in EDS-HT, being bendy can cause lots of problems.

5. So… what does that mean?
Someone with EDS-HT can have problems with the following things at school:
Writing
Sports & P.E.
Eating
Walking & Running
Carrying bags
Sitting on the floor
…and many other things!

6. What’s different for someone with EDS-HT?
They might use special pens and pencils
They might do special physio-therapy
They might have to take medicines
They might not be able to do P.E.
They might use a computer in lessons
They might wear braces on their joints
They might use a special chair
They might use a wheelchair or crutches

7. What can I do to help?
If you have a friend with EDS-HT, there are things you can do to help them: And remember, just because they have EDS it doesn’t make them ‘different’. You should treat them the same as everyone else.
Carry their things if they need help
Play a different game so they can join in
Don’t treat them differently from others
Don’t exclude them from what you are doing
Tell someone if they fall over or hurt themselves
Let them talk if they are upset
Help them catch up if they’ve been off school
Don’t get upset if they can’t do something
Remember they might be very tired and in pain

8. How can I raise awareness for EDS UK?
Here are some ideas to raise awareness and money for EDS UK:
Hold a bake sale
Run (or walk) 5km
Make zebra-themed crafts to sell
Give some leaflets to your GP surgery
Wear a zebra onesie

9. Contact EDS UK www.ehlers-danlos.org Office contact
Telephone:
Helpline
Freephone: