ERN ReCONNET joined the “Day of the Zebra”
Since last year, ERN ReCONNET decided to join some international awareness days to raise awareness of relevant matters related to the healthcare ecosystem. As Network, we believe it is important to join the forces by participating to these social media campaigns.
Jan. 31st is the Day of the Zebra, a day dedicated to shed a light on people with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) that often identify themselves as zebras. Why? Because medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis. People with rare and chronic diseases spend years searching for answers: “But you look normal”, “You’re too young to have so many problems”, “You’re too old”, “You can’t have that, it’s too rare”, “No one knows what that is”.
The zebra became their symbol, those with EDS and HSD are the unexpected. “Sometimes when you hear hoofbeats, it really is a zebra.” . 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 EDS or HSD are identical: The have different symptoms, different types, and different experiences.
The ERN ReCONNET EDS Disease Group, Coordinated by Prof. Fransiska Malfait from Ghent University Hospital (Belgium), Prof. Alberto Sulli from the IRCCS Polyclinic Hospital San Martino – University of Genova (Italy), ePAG Eva Collado from Asociacion Nacional Sindromes Ehlers-Danlos e Hiperlaxitude (ANSEDH), and ePAG Charissa Frank from Bindweefsel.be -Vlaamse Vereniging voor Erfelijke Bindweefselaandoeningen, has been working on several projects to generated EDS knowledge targeting patients and clinicians.
In the past years, a total of #7 webinars focused on pediatric and adult patients have been developed about EDS that are free to watch on our official ERN ReCONNET YouTube Channel; in addition, all the resources available on EDS can been seen here.
Also, ERN ReCONNET had the pleasure to partner in some activities with The Ehlers-Danlos Society as we are all working towards a time when a medical professional immediately recognizes someone with an EDS or HSD, reducing the time to diagnosis, and improving pathways to care.
Advocacy and Support are at the basics of the ERN ReCONNET mission and vision, so as a Network together we dazzle!
PS. A group of zebras is called a dazzle 🙂
