NATIONAL MONTH

Ehlers-Danlos Syndrome Awareness Month

On Ehlers-Danlos Syndrome Awareness Month, we listen louder, learn more, and make sure no one feels invisible.

WHEN

May

Roots: Founded in 2006 by the Ehlers-Danlos Society
Vibe: Advocacy, education, and community support
Hashtag: #EhlersDanlosSyndromeAwarenessMonth

Send a card Email a friend

Ways to celebrate

Small, doable ways to celebrate Ehlers-Danlos Syndrome Awareness Month.

Share one reputable resource with your network.
Donate to a patient-led organization working on ehlers-danlos syndrome awareness.
Check in on someone you know who's living with it.
Book the screening or appointment you've been putting off.
Listen more than you speak.

Fast facts

Approximately 1In 5,000 people are affected by EDS

There are 13 recognized types of EDS

The story

Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders that can lead to hypermobility, skin elasticity, and fragility. Awareness Month, observed every May, aims to educate the public about the complexities of EDS and the everyday challenges faced by those who live with it. This initiative has been vital in bringing attention to a condition that is often misunderstood.

Read the full story

Throughout May, various events are organized globally, including walks, talks, and online campaigns aimed at raising awareness. These efforts help to foster understanding and compassion for individuals living with EDS. The Ehlers-Danlos Society plays a crucial role in providing resources and support to those affected, advocating for better research and treatment options.

One of the most important aspects of EDS Awareness Month is the emphasis on community and connection. Many individuals with EDS experience feelings of isolation due to the invisibility of their condition. By sharing personal stories, they can help others understand their struggles and triumphs. This highlighted phrase captures the essence of this month, fostering solidarity among patients and their families.

As we move through May, it is essential to remember the importance of advocacy and education. Engaging with local communities, sharing experiences, and supporting ongoing research initiatives can significantly impact the lives of those with EDS. By coming together, we can create a society that is more informed and compassionate toward individuals with this often-overlooked condition.

Worth knowing

Understanding EDS

Ehlers-Danlos Syndrome is a group of genetic disorders affecting connective tissues. Understanding this condition is crucial for supporting individuals living with EDS.

Show Your Support

Wearing awareness ribbons during May helps to visually represent support for those with EDS. It's a simple yet impactful way to raise awareness.

Educational Resources

Several organizations provide valuable resources on EDS. Utilizing these can help spread knowledge and foster understanding within communities.

Join Local Events

Participating in local EDS events not only raises awareness but also connects you with others who share similar experiences and insights.

Did you know?

First Recognized Case

Researchers have revised how EDS is classified several times, most recently in 2017.

Types of EDS

There are 13 different types of Ehlers-Danlos Syndrome, each with unique symptoms and challenges.

Genetic Basis

EDS is primarily caused by genetic mutations affecting collagen, a key protein in connective tissues.

Diagnosis Challenges

Many individuals face challenges obtaining an EDS diagnosis, as symptoms can mimic other conditions.

Support Networks

Numerous support networks exist globally, connecting individuals with EDS for shared experiences and information.

Research Efforts

Ongoing research is crucial for developing better diagnostic tools and treatment options for EDS patients.

Community Impact

Community involvement plays a significant role in raising awareness and supporting EDS research initiatives.

Around the world

Every culture celebrates a little differently.

USUnited StatesIn the U.S., May is officially recognized as EDS Awareness Month, with various events across the country.
GBUnited KingdomThe UK also participates in EDS Awareness Month, hosting discussions and support groups for affected individuals.
CACanadaCanadian organizations focus on raising awareness and providing resources during May for EDS.
AUAustraliaIn Australia, communities come together to increase understanding of EDS through various campaigns and support networks.
DEGermanyGermany recognizes EDS Awareness Month with educational initiatives aimed at healthcare professionals and the public.
FRFranceIn France, EDS Awareness Month fosters collaboration among medical professionals to improve diagnosis and treatment.