1. The Ehlers-Danlos Support UK
13/11/2018

2. What will we be learning today?
Who are EDS UK and what do they do?
What is Ehlers Danlos Syndrome?
Genes!
Symptoms of Hypermobile EDS and how this affects you at school
What you can do to help!

3. What do we do?
Hold conferences on a variety of topics including – joint hypermobility, managing your EDS and diagnostics
Offer help to those seeking diagnosis, those needing to manage their EDS or those requiring emotional support
Social media – successfully running support networks through social media outlets
Support groups – running support groups for members of EDS UK
Fundraising – assisting individuals with fundraising in their local area
Awareness – spreading awareness of EDS through different outlets
11/13/2018

4. What are the Ehlers-Danlos Syndromes?
There are lots of different types of EDS, but the most common type is the hypermobility type.
The ‘glue’ that holds the body together doesn’t work properly
Genetic condition – this means it runs in families
Affects the WHOLE body!
13/11/2018

5. Genes! Genetic condition – this means it’s in your GENES
Genes are what make us – US!
They affect our eye colour
If we can roll our tongue
And how we clasp our hands
11/13/2018

6. What are the main symptoms of Hypermobile EDS?
Stretchy skin
Dislocations
Easy bruising
Tummy problems
Pain
Fatigue
Bendy joints
Feeling dizzy
13/11/2018

7. Being ‘hypermobile’ means you are bendy!
A lot of the time, being bendy or flexible is a good thing (think about gymnasts and athletes). But when you have EDS, you can be too bendy and it can cause big problems
13/11/2018

8. How does EDS affect someone at school?
They could have problems with:
Writing
Sports and P.E.
Walking and running in the playground
Carrying bags
Eating
Sitting on the floor
… there’s lots more. Can you think of some?
11/13/2018

9. What’s different for someone with EDS at school?
They might use special pens and pencils
They might not do P.E.
They might wear braces on their joints
They might do special physiotherapy
They might use a wheelchair or crutches
… can you think of anything else?
11/13/2018

10. What can you do to help?
If you had a friend with EDS at school, how would you help them?
Help them carry their things
Don’t exclude them from what you are doing or playing
Play a different game so they can join in
Don’t treat them any differently to others
Tell an adult if they fall over or hurt themselves
Remember they might be very tired and in pain
Don’t get upset if they can’t do something
Always be kind and thoughtful! We are all unique and we should treat each other with love and respect
11/13/2018

11. Thank you for listening!
Fun Fact!
Dogs can get EDS too!
A main symptom for them is extremely stretchy skin!
They have to be looked after too
11/13/2018