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EDS Awareness Month

Join us in spreading awareness and supporting those affected by EDS during this special month dedicated to raising awareness for the condition.
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May 1
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Introduction

Get ready to raise awareness and support for those living with Ehlers-Danlos Syndrome (EDS) as we kick off EDS Awareness Month on May 1! EDS is a rare genetic disorder that affects the body's connective tissues, causing symptoms such as joint hypermobility, chronic pain, and skin fragility. This month-long observance was first recognized in 1987 by the Ehlers-Danlos National Foundation in an effort to educate the public about this often misunderstood condition. Let's use this month to spread understanding and support for those living with EDS and their families.

History of EDS Awareness Month

EDS Awareness Month Dates

EDS Awareness Month Timeline

<div class='timeline-item'><div class='timeline-left'><div class='timeline-date-text'>1901</div></div><div class='timeline-center'></div><div class='timeline-right'><div class='timeline-text timeline-text-title'>Identification of EDS</div><div class='timeline-text'>Ehlers-Danlos Syndrome was first identified and described by two dermatologists, Edvard Ehlers from Denmark and Henri-Alexandre Danlos from France.</div></div></div><div class='timeline-item'><div class='timeline-left'><div class='timeline-date-text'>1987</div></div><div class='timeline-center'></div><div class='timeline-right'><div class='timeline-text timeline-text-title'>First EDS Awareness Month</div><div class='timeline-text'>The Ehlers-Danlos National Foundation officially recognized May as EDS Awareness Month in an effort to raise knowledge and understanding.</div></div></div><div class='timeline-item'><div class='timeline-left'><div class='timeline-date-text'>1997</div></div><div class='timeline-center'></div><div class='timeline-right'><div class='timeline-text timeline-text-title'>International EDS Foundation Formation</div><div class='timeline-text'>An international organization, the Ehlers-Danlos Society, was established to provide global solutions for EDS research, collaboration, and patient support.</div></div></div><div class='timeline-item'><div class='timeline-left'><div class='timeline-date-text'>2012</div></div><div class='timeline-center'></div><div class='timeline-right'><div class='timeline-text timeline-text-title'>Global Learning Conference</div><div class='timeline-text'>EDS communities around the world come together for the first time at a learning conference in Ghent, Belgium to exchange knowledge and expertise.</div></div></div><div class='timeline-item'><div class='timeline-left'><div class='timeline-date-text'>2017</div></div><div class='timeline-center'></div><div class='timeline-right'><div class='timeline-text timeline-text-title'>New EDS Types Defined</div><div class='timeline-text'>The International Consortium on the Ehlers-Danlos Syndromes redefines 13 different types of EDS, improving diagnosis and research.</div></div></div>

How to Celebrate EDS Awareness Month

<div id='' class='facts-item'><div id='' class='facts-header'><h3 id='' class='facts-number'>1</h3></div><div id='' class='facts-text-wrapper'><h3 id='' class='facts-title'>Educate yourself and others</h3><p id='' class='facts-text'>Take the time to learn more about EDS (Ehlers-Danlos Syndrome) and share your knowledge with friends and family. This can help raise awareness and understanding of the condition.</p></div></div><div id='' class='facts-item'><div id='' class='facts-header'><h3 id='' class='facts-number'>2</h3></div><div id='' class='facts-text-wrapper'><h3 id='' class='facts-title'>Organize a fundraiser</h3><p id='' class='facts-text'>Get creative and organize a fundraiser to support EDS research and awareness. This could be anything from a bake sale to a charity walk or run.</p></div></div><div id='' class='facts-item'><div id='' class='facts-header'><h3 id='' class='facts-number'>3</h3></div><div id='' class='facts-text-wrapper'><h3 id='' class='facts-title'>Share your story</h3><p id='' class='facts-text'>If you or someone you know has EDS, share your personal story on social media or start a blog. This can help raise awareness and provide support for others living with the condition.</p></div></div><div id='' class='facts-item'><div id='' class='facts-header'><h3 id='' class='facts-number'>4</h3></div><div id='' class='facts-text-wrapper'><h3 id='' class='facts-title'>Wear zebra stripes</h3><p id='' class='facts-text'>Zebra stripes are the symbol for EDS awareness. Wear some zebra print clothing or accessories to show your support and start conversations about the condition.</p></div></div><div id='' class='facts-item'><div id='' class='facts-header'><h3 id='' class='facts-number'>5</h3></div><div id='' class='facts-text-wrapper'><h3 id='' class='facts-title'>Attend an EDS event</h3><p id='' class='facts-text'>Check out local events or conferences focused on EDS and attend to learn more, connect with others, and support the cause.</p></div></div>

Why EDS Awareness Month is Important

<div id='' class='whywelove-item'><div id='' class='whywelove-letter-cont'><div class='whywelove-letter'>A</div></div><div id='why-we-love-main-cont'><h3 id='' class='whywelove-title'>Raise Awareness and Educate Others</h3><p id='' class='whywelove-text'>EDS Awareness Month is crucial in spreading information and educating others about Ehlers-Danlos Syndrome. This rare genetic condition affects connective tissues and can have a huge impact on a person's life. By raising awareness, we can help to educate others and promote understanding and compassion for those living with EDS.</p></div></div><div id='' class='whywelove-item'><div id='' class='whywelove-letter-cont'><div class='whywelove-letter'>B</div></div><div id='why-we-love-main-cont'><h3 id='' class='whywelove-title'>Advocate for Research and Funding</h3><p id='' class='whywelove-text'>EDS Awareness Month also provides an opportunity for advocating for more research and funding towards finding better treatments and potentially even a cure for this condition. By highlighting the challenges faced by those with EDS, we can encourage support from individuals, organizations, and government agencies towards making progress in improving the lives of those affected.</p></div></div><div id='' class='whywelove-item'><div id='' class='whywelove-letter-cont'><div class='whywelove-letter'>C</div></div><div id='why-we-love-main-cont'><h3 id='' class='whywelove-title'>Show Support and Solidarity</h3><p id='' class='whywelove-text'>Lastly, EDS Awareness Month is important because it allows us to come together as a community to show support and solidarity for those living with EDS. By participating in events and sharing our stories, we can create a sense of belonging and offer hope to those who may feel alone in their struggles. Together, we can make a difference in the lives of those affected by this condition.</p></div></div>

5 Unveiled Facts about Ehlers-Danlos Syndrome

<div class='facts-item'><div class='facts-header'><h2 class='facts-number'>1</h2></div><div class='facts-text-wrapper'><h4 class='facts-title'>Ehlers-Danlos Syndromes are a group of related disorders</h4><p class='facts-text'>EDS is not a singular condition but a group of related genetic disorders affecting the body’s connective tissues, which includes 13 subtypes each with its own distinct characteristics.</p></div></div><div class='facts-item'><div class='facts-header'><h2 class='facts-number'>2</h2></div><div class='facts-text-wrapper'><h4 class='facts-title'>Zebra is the symbol of EDS awareness</h4><p class='facts-text'>In medical terminology 'zebra' often refers to a very rare disease, and is thus adopted as a symbol for EDS, a rare genetic condition.</p></div></div><div class='facts-item'><div class='facts-header'><h2 class='facts-number'>3</h2></div><div class='facts-text-wrapper'><h4 class='facts-title'>Many EDS patients struggle with diagnosis due to lack of awareness</h4><p class='facts-text'>Because EDS is relatively rare and exhibits a wide range of symptoms, many patients face misdiagnoses or delayed diagnosis, making awareness crucial.</p></div></div><div class='facts-item'><div class='facts-header'><h2 class='facts-number'>4</h2></div><div class='facts-text-wrapper'><h4 class='facts-title'>Hypermobile EDS is believed to be underdiagnosed</h4><p class='facts-text'>The most common type of EDS, Hypermobile EDS, is believed to be underdiagnosed due to the variance and subtlety of symptoms.</p></div></div><div class='facts-item'><div class='facts-header'><h2 class='facts-number'>5</h2></div><div class='facts-text-wrapper'><h4 class='facts-title'>Treatment of EDS focuses on managing symptoms</h4><p class='facts-text'>As there is currently no cure for any form of EDS, treatment generally focuses on managing symptoms and helping patients maintain as active and normal a life as possible.</p></div></div>

EDS Awareness Month FAQs

When is EDS Awareness Month?

EDS Awareness Month is celebrated on May 1 every year. In 2024 EDS Awareness Month will occur on a Wednesday.

EDS Awareness Month Dates

Year
Date
Day

2023

May 1

Monday

2024

May 1

Wednesday

2025

May 1

Thursday

2026

May 1

Friday

2027

May 1

Saturday

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