EDS Awareness Month 2025

Why It Matters and How You Can Help

Each May, communities around the world recognize Ehlers-Danlos Syndromes (EDS) Awareness Month, a time dedicated to increasing understanding of a group of complex, often misunderstood connective tissue disorders. For those living with EDS and Hypermobility Spectrum Disorders (HSD), awareness isn't just about visibility — it's about validation, access to better care, and hope for the future.

What Is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndromes (EDS) refer to a group of genetic connective tissue disorders that affect the body’s ability to produce strong collagen. Collagen is a critical protein that gives structure and elasticity to the skin, joints, blood vessels, and other tissues. When collagen is weakened or produced abnormally, it can lead to a wide range of symptoms that vary depending on the type of EDS.

Common symptoms may include:

• Joint hypermobility (joints that move beyond normal range)
• Frequent joint dislocations or subluxations
• Chronic pain and fatigue
• Fragile, stretchy skin
• Digestive issues
• Easy bruising or poor wound healing
• Autonomic dysfunction (like dizziness, nausea, and temperature regulation problems)

EDS is considered a rare disease, but it's increasingly clear that many people may go undiagnosed or misdiagnosed for years. Hypermobility Spectrum Disorders (HSD) share many features with the hypermobile type of EDS and are also part of this broader conversation.

The History of EDS Awareness Month

EDS Awareness Month began as a grassroots effort by patients and advocates to shed light on this under-recognized condition. Over time, these efforts have gained momentum, leading to official proclamations and recognition across the United States and internationally.

In recent years, support has grown among lawmakers and public officials. In Michigan, Senator Ruth Johnson sponsored a 2024 resolution formally recognizing May as Ehlers-Danlos Syndrome Awareness Month, highlighting the importance of education, research, and support for individuals affected by EDS [1].

Similarly, in Virginia, Governor Glenn Youngkin issued a proclamation declaring May as Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Awareness Month, acknowledging the complex and often invisible nature of these conditions and affirming the need for broader public understanding [2].

These efforts reflect a growing commitment to bringing EDS and HSD out of the shadows — and into the light of medical, political, and public discourse.

Why Awareness Month Matters

Living with EDS often means facing misunderstanding—not just from the public, but sometimes even within the healthcare system. People may be told “it’s all in your head,” or struggle to find specialists who understand how EDS affects multiple systems in the body.

Awareness leads to earlier diagnosis, better support, and more research funding. When people recognize the signs and symptoms, they’re more likely to advocate for themselves or loved ones. And when the medical community pays attention, treatment options improve.

What You Can Do This May

Raising awareness doesn’t require a big platform. Small acts can have a ripple effect. Here are some meaningful ways to get involved:

• Learn and Share: Educate yourself about EDS and share what you learn on social media or with friends and family.
• Use Your Voice: Share stories or information using the hashtag #EDSAwarenessMonth to help normalize the condition and reduce stigma.
• Wear Something Zebra: The zebra has become a symbol for rare diseases like EDS, reminding us to look beyond the obvious. Wearing zebra stripes can start important conversations.
• Support Advocacy and Research: Whether through donations, writing letters, or volunteering, every action helps push the field forward.

A Call for Compassion and Curiosity

The reality for many people with EDS is a life of navigating invisible pain, fatigue, and misunderstood symptoms. EDS Awareness Month is an invitation to be curious, to listen more closely, and to advocate for a world where rare doesn’t mean ignored.

This May, take a moment to learn about Ehlers-Danlos Syndromes and the people living with them. Awareness is the first step toward action — and action can change lives.

Sources

1. Senator Ruth Johnson. “Sen. Johnson sponsors Ehlers-Danlos Syndrome Awareness Month resolution.” Michigan Senate Republicans. https://www.senatorruthjohnson.com/sen-johnson-sponsors-ehlers-danlos-syndrome-awareness-month-resolution
2. Governor Glenn Youngkin. “Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Awareness Month.” Office of the Governor, Virginia. https://www.governor.virginia.gov/newsroom/proclamations/proclamation-list/ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders-awareness-month.html

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