UCL Great Ormond Street Institute of Child Health


Great Ormond Street Institute of Child Health


EDS Awareness

In recognition of EDS (Ehlers-Danlos) Awareness Month, we decided to dedicate a page to resources and artwork based on EDS.

“Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.”1 There are 13 subtypes of EDS, 12 of which are diagnosed via genetic testing.1 EDS is a rare disease—the overall prevalence is between 1 in 3,500 to 1 in 5,000 people.2 The zebra has been adopted as the mascot or symbol of EDS: 

“When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome or HSD are identical. We have different symptoms, different types, different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome or HSD, reducing the time to diagnosis, and improving pathways to care.”3,4 

For more information, please see the references below from The Ehlers Danlos Society.  

1 https://www.ehlers-danlos.com/eds-types/  

2 https://www.ehlers-danlos.com/what-is-eds/  

3 https://www.ehlers-danlos.com/why-the-zebra/  

4 https://www.ehlers-danlos.com/wp-content/uploads/WhyTheZebra.pdf