1. Ehlers-Danlos syndrome Hypermobility Type

2. 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).

3. What are the main symptoms of EDS-HT? Bendy joints Feeling dizzy Easy bruising Stretchy skin 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: Walking & Running WritingSports & P.E. Eating Carrying bags Sitting on the floor …and many other things!

6. What’s different for someone with EDS-HT? They might use a wheelchair 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

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 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

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: 0208 736 5604 Email: info@ehlers-danlos.orginfo@ehlers-danlos.org Helpline Freephone: 0800 907 8518 Email: helpline@ehlers-danlos.org