Every May the global Ehlers-Danlos Syndrome community comes together for EDS Awareness Month — a dedicated time to shine a light on a condition that affects millions of people but remains widely misunderstood.
At The Andrea Foundation For EDS (TAFFEDS), EDS Awareness Month is one of the most important times of the year. It is a time to share stories, spread education, and remind every EDS patient and family that they are seen, heard, and not alone.
What Is EDS Awareness Month?
EDS Awareness Month takes place every May. During this month EDS patient advocacy organizations, healthcare professionals, patients, and families work together to raise public awareness of Ehlers-Danlos Syndrome through social media campaigns, educational content, community engagement, and advocacy initiatives.
Why Does EDS Need Its Own Awareness Month?
EDS remains one of the most underdiagnosed conditions in the United States. An average diagnostic delay of fifteen years means that millions of people are living with EDS without knowing it — or without the support they need. EDS Awareness Month is a chance to change that one conversation at a time.
The Zebra — Symbol of the EDS Community
You may notice that the EDS community uses the zebra as its symbol. This comes from a well-known saying in medical education — when you hear hoofbeats think horses not zebras. In other words assume the common explanation before the rare one.
EDS patients are the zebras. They are the people whose symptoms are real but whose diagnoses are not obvious — the ones who fall outside the expected pattern and get overlooked as a result. The zebra symbol says: we are real. We are here. We deserve to be seen.
No two zebras have the same stripes — just as no two EDS patients have exactly the same journey. That individuality and that resilience is at the heart of everything The Andrea Foundation For EDS stands for.
How to Participate in EDS Awareness Month
Follow The Andrea Foundation For EDS on TikTok, YouTube, Facebook, Instagram, and X to receive daily EDS awareness content throughout May. Share our posts with your family, friends, and community. Tell one person about EDS this month. Share your story. Donate to support our mission.
Together — one conversation at a time — we can close the fifteen-year gap.
Medical Disclaimer: This article is for educational and awareness purposes only and is not intended as medical advice.