Patients with the Ehlers-Danlos syndromes and related conditions are often called zebras, and a group of zebras is called a dazzle! In the wild, a group of zebras create an optical dazzle effect, confusing predators and protecting the group. As individuals, we are strong, but we are so much stronger when we combine our stripes and come together. Every May, our dazzle assembles to raise awareness for the Ehlers-Danlos syndromes and related disorders.
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.
But many of us spend years pursuing a diagnosis for disorders that aren’t well known. Or aren’t expected in someone who looks normal, or is too young to have so many problems, or too old. Or even, what we might have is considered too rare for anybody to be diagnosed with it.
So the zebra became our symbol to mean, “Sometimes when you hear hoofbeats, it really is a zebra.” Ehlers-Danlos syndromes are unexpected because they’re rare. Hypermobile spectrum disorders are common, but are unexpected because they remain misdiagnosed or under-diagnosed.
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.
We are a community of individual zebras, we are stronger together, and we dazzle.
Dazzle the Competition!
We are running a competition for the group and individual who raises the most amount of money by May 31st.
Set up a fundraising page and collect donations throughout the month of May. You may enter as an individual or register a group. The group and individual that raises the most funds by May 31st will be declared our 2017 Dazzle Champions and will be honored at the Las Vegas Learning Conference on September 7th-9th.
The winning individual will receive a ZebraStrong hoodie! The winning group Dazzle will receive a private Webinar Q&A session with Dr. Clair Francomano!
How Will You Dazzle?
We may all have different stripes, but together we can dazzle! Pick the fundraiser that suits you and tell people about your condition along the way. Help us spread awareness and education about the Ehlers-Danlos syndromes and related disorders by wearing your zebra stripes – and help us raise money for the much needed EDS registry.
The sky is the limit in terms of ideas and you can wear your stripes and dazzle however you choose, but below are a few ideas to get you started.
Share your progress on social media #DazzleTogether
Where Your Support Goes This May
The Society are currently working with the Ehlers-Danlos International Consortium and our medical and scientific board to build the registry we need to find the answers to the many questions that we have within the spectrum of these conditions. Help us raise the $500,000 we need to launch this project.
We need to learn more about the epidemiology of the syndromes and prove just how many people are living with these disorders. To date, there has been no registry for the Ehlers-Danlos Syndromes and related disorders that has been a collaborative project across all the different forms. We plan to host a registry that will help us with discovery to find the gene for the hypermobile type, to find out how many people are living with the rarer types, learn more about the natural history, and discover the relationship between the many comorbidities.
Dazzle Kit! Fundraising and Awareness Toolkit
- Set up a on-line FriendRaiser
- Fundraising brochure
- Tri-fold Brochure – “What are the Ehlers-Danlos syndromes?”
- Tri-fold Brochure – “What are the hypermobility spectrum disorders?”
- Poster – “What are the Ehlers-Danlos syndromes?” (11″x17″)
- Poster – “What are the hypermobility spectrum disorders?” (11″x17″)
- PowerPoint – “The EDS/HSD 2017 Classification” and accompanying PDF – “The EDS/HSD 2017 Classification”