A news source by and for the EDS community.

May is Ehlers-Danlos Syndrome Awareness Month!

Chronic Pain Partners / EDS Awareness has partnered up with EDS SHARE to bring to you the CARE-E-OKE challenge! 

Join the "Care-e-oke Challenge" & Make Some Noise for EDS Awareness! 🦓 (Text by EDS SHARE):

As you know, May is Ehlers-Danlos Syndrome (EDS) Awareness Month, and a band of other zebras and I came together, and we're excited to announce a brand new, fun-filled campaign to raise awareness for EDS – the "Care-e-oke Challenge!" And we are featuring BJSCF as a benefactor on the site! Read below or check out our website at www.care-e-oke.com to learn more, and let me know if I can help you share this with your community. Please let me know any questions or concerns you have, and I hope you will spread the word in May for EDS. 

Here's how you can join the "Care-e-oke Challenge":

1. Choose a song that embodies strength, resilience, or hope – anything that resonates with the spirit of EDS warriors.
2. Record a video of yourself or a group passionately singing the chosen song. Feel free to get creative with costumes, choreography, or props!
3. Post the video on your favorite social media platform using the hashtags #Care-e-okeChallenge and #EDSZebras. Tag at least three friends to challenge them to participate and sing out loud for EDS awareness.
4. Include a short caption explaining why you're participating and share a fact about EDS. Add a link to an EDS-related charity or resource for more information and support.

If you're not comfortable creating a video, no worries! You can still participate by sharing our specially designed collateral on your social media platforms. Simply download the images and messages from our campaign toolkit or on our website www.care-e-oke.com, and share them with your friends and followers using the same hashtags, #Care-e-okeChallenge and #EDSZebras.

To make the biggest impact, we encourage you to spread the word by sharing this email with friends, family, and colleagues. The more voices we gather, the louder our message of hope and support will be for the EDS community! Get ready to sing out loud for zebras! And yes, please do drop the mic!

Thank you for joining us in this musical journey to raise EDS awareness. Together, we'll make May a month to remember for EDS Zebras everywhere!

A recent publication by researchers at Tulane University hypothesizes MTHFR mutations lead to folate deficiency, resulting in hypermobility. The researchers also propose these mutations may cause or contribute to a form of hypermobile EDS. Journalist Karina Sturm spoke with Jacques Courseault, physical medicine and rehabilitation and sports medicine doctor at Tulane’s Hypermobility and EDS clinic, as well as with Professor Gregory Bix, Director Clinical Neuroscience Research Center. The researchers explain their hypothesis and how it may relate to hypermobile EDS, share potential treatment options, and their future plans to prove the proposed mechanism. Additionally, we also put together a news piece summarizing their findings. 

EDSed Episode 4 with GI Doctor Jacqueline Wolf, MD

New CPP Guide & E-Book on Filing for Disability

Here are a few key lessons learned from the scars of battle as patients with EDS and how to prepare yourself and your troops. Disability is an enormous topic with many nuances, so do your research. Start by learning the basics of when a chronic illness becomes a disability. Ensure you are well informed if you enter the battlefield, armed with your best weapons, allies, and bunker buddies, because you will need all the help you can get.

How To Evaluate The Quality of EDS Research Papers?

Interviews & More

Guest Blog Post

Survey Participants Needed

Penn State College of Medicine is seeking U.S. participants with Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD) for a research survey. 

This study is to better understand the economic impact of EDS and HSD. The questionnaire should take approximately 30 minutes to complete and allows you to save your work and complete it in multiple sessions. It is recommended that you gather your 2022 medical expenses before you begin. 

The economic impact of managing EDS and HSD is both underappreciated and significant. Patients frequently bear enormous out-of-pocket costs for medical appointments, mobility aids and physical therapy not covered by insurance plans. Special diets and supplements recommended for many with EDS are prohibitively expensive. 

This study was approved by the Penn State College of Medicine’s Institutional Review Board (IRB) and funded in part by the Ehlers-Danlos Syndrome Research Foundation.

You can participate here: 

New Resources

The CPP Newsletter team is taking a little break in June, but we will be back as usual with more new content in July! Stay tuned for our next newsletter, and have a lovely EDS Awareness month! 

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