The EhlersDanlos Support UK 05112020 www ehlersdanlos org

The Ehlers-Danlos Support UK 05/11/2020 www. ehlers-danlos. org 1

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!

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 www. ehlers-danlos. org 11/5/2020 3

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! 05/11/2020 www. ehlers-danlos. org 4

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 11/5/2020 www. ehlers-danlos. org 5

What are the main symptoms of Hypermobile EDS? Dislocations Tummy problems Bendy joints 05/11/2020 Pain www. ehlers-danlos. org Stretchy skin Easy bruising Fatigue Feeling dizzy 6

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 05/11/2020 www. ehlers-danlos. org 7

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? www. ehlers-danlos. org 11/5/2020 8

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? 11/5/2020 www. ehlers-danlos. org 9

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 11/5/2020 www. ehlers-danlos. org 10

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 11/5/2020 www. ehlers-danlos. org 11