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Ehlers-Danlos syndromeHypermobility Type
What is Ehlers-Danlos syndrome - 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!
There are lots of different types of EDS, but the most common type is the hypermobility
type (EDS-HT).
What are the main symptoms of EDS-HT?
Bendy joints
Feeling dizzy
Easy bruisin
g
Stretchy skin
Tummy problem
s
Feeling tired
Dislocations
PAIN!
EDS-HT is an INVISIBLE condition, so people with EDS-HT look completely
normal!
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.
So… what does that mean?Someone with EDS-HT can have problems with the following things at school:
Walking & Running
WritingSports &
P.E.Eating
Carrying bags
Sitting on the floor
…and many other things!
What’s different for someone with EDS-HT?
They might use
a wheelchai
r or crutches
They might use
special pens and pencils
They might wear
braces on their joints
They might do special physio-therapy
They might not be able to
do P.E.
They might use a special
chair
They might use
a computer in lessons
They might
have to take
medicines
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
Help them catch up if they’ve
been off school
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
Play a different game so they
can join in
Don’t get upset if they can’t do
something
Remember they might be very
tired and in pain
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
Contact EDS UK
www.ehlers-danlos.org
Office contactTelephone: 0208 736 5604Email: [email protected]
HelplineFreephone: 0800 907 8518Email: [email protected]
