Ehlers-Danlos Support Group of Jacksonville

Ehlers-Danlos Support Group of Jacksonville We are a Florida nonprofit since 2019. We also have a private Facebook group for member interactions, access to recommended providers, and updates.

Our mission is to support individuals affected by Ehlers-Danlos Syndrome & Hypermobility Spectrum Disorders, living in or seeking treatment in Jacksonville, FL, through education, community & outreach. Established as a nonprofit in Florida in 2019, the Ehlers-Danlos Support Group of Jacksonville hosts monthly meetings with guest speakers every first Saturday, and socials every third Thursday. Visi

t us at www.edsjacksonville.org or join our Facebook group at https://www.facebook.com/groups/371654683684562. We welcome members outside the region seeking medical care in Jacksonville. For more information, contact our president, Rachel Goodman, at 904-703-1190 or [email protected].

Adaptive Halloween Costume Project! This exciting community collaboration creates custom Halloween costumes that incorpo...
07/29/2026

Adaptive Halloween Costume Project!

This exciting community collaboration creates custom Halloween costumes that incorporate each child’s wheelchair, allowing them to fully participate in Halloween while celebrating creativity, inclusion, and independence.

Please read before applying:
This project will include photographs, video, interviews, and media coverage.

Participation is first come, first served.

Only 7 families from Duval, Nassau, Clay, St. Johns, and Baker Counties will be selected.
Completed applications must be received by August 7, 2026.
Participants must be available for scheduled fittings, the costume reveal, and the community festival.

Apply here: https://forms.cloud.microsoft/pages/responsepage.aspx?id=OEfaaCkJVUmiZOYeKHntIjJ0D8Aln2dEreiwqPd09PJURDFSQ1FESk9VWU9ZU05PNlc3VlMzN1AzOS4u&route=shorturl

07/25/2026

The Ehlers-Danlos Support Group of Jacksonville, Inc., is a Florida nonprofit serving individuals and families affected by Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions.

What started as a local support community in 2018 officially became a Florida nonprofit in 2019. We are also proud to be a member of The Ehlers-Danlos Society Global Alliance, connecting our local community with a worldwide network of organizations working to support people affected by EDS and HSD.

Over the years, our community has grown to include people throughout Florida and beyond, including many who travel to Jacksonville for medical care.

Our goal has always been simple: to help people find information, resources, connection, and—perhaps most importantly—other people who understand.

As a member of our community, you have access to:

• Monthly educational meetings with guest speakers via Zoom on the first Saturday of each month at 1:00 PM ET
• Facebook group, https://www.facebook.com/groups/371654683684562 where members can ask questions, share experiences, exchange resources, and support one another
• Our community-recommended provider list
• Our monthly in-person Zebra & Friends Social
• A community of people who understand many of the challenges that come with EDS, HSD, and related conditions

Monthly Zoom Meeting

First Saturday of each month at 1:00 PM ET

Zoom Link:
https://us02web.zoom.us/j/83537445568?pwd=HDc854aXbqVz3YKMkRQqmDWueKB1sA.1

Meeting ID: 835 3744 5568
Passcode: 714391

Zebra & Friends Social

Third Thursday of each month at 2:00 PM

Lofts at San Marco East – Resident Lounge
3036 Philips Hwy
Jacksonville, FL 32207

Please enter through the guest/delivery entrance using callbox code 027.

You can also find us here:

page: https://www.facebook.com/EDSjacksonville/
Facebook Group: https://www.facebook.com/groups/371654683684562
Instagram: https://www.instagram.com/edsjacksonville/
YouTube: https://www.youtube.com/
TikTok: https://www.tiktok.com/

Whether you were diagnosed years ago, are newly diagnosed, are still looking for answers, or are here to support someone you care about, I hope this community can be a place where you feel comfortable asking questions, sharing what you’re going through, and connecting with others who understand.

Thank you for being here and for helping make this community what it is. Every question, shared experience, recommendation, and word of encouragement helps someone else feel a little less alone in navigating EDS and HSD.

I’m glad you’re here.

Rachel Goodman
President & Founder
Ehlers-Danlos Support Group of Jacksonville, Inc. The Ehlers-Danlos Society

07/18/2026

🗣️ "You look fine. You're just being lazy."
It lands like a verdict. You spend the day on the couch, and someone decides they know why.

Here's what they can't see: your body has been working since the second you stood up. Not metaphorically. Measurably.

📌 A note on scope: I personally navigate Classical EDS, but this post breaks down research on hEDS and Hypermobility Spectrum Disorder (HSD), the most common hypermobility diagnoses. Experiences vary, and this isn't medical advice.

Three evidence-based reasons standing can drain you:

1. The stability tax: your muscles pay what your ligaments can't
In a typical body, ligaments hold your joints in place passively. It costs almost nothing. Standing is cheap.

When connective tissue is built differently, that passive support is reduced, so your muscles have to actively hold joints steady that would otherwise slip or strain. And this isn't a vague feeling. In one study, women with hEDS had knee muscle strength and endurance measurably reduced compared to matched controls, and researchers concluded it came from muscle dysfunction, not smaller muscles. Your muscles are doing overtime just to keep you upright.

2. The circulation loop (for those who also have POTS)
POTS is one of the most frequently documented conditions alongside hEDS. When it's present, standing can trigger a sharp jump in heart rate.

The leading explanation is that lax connective tissue in the vein walls lets blood pool in the legs, so less returns to the heart, and the heart speeds up to compensate. Note the word "explanation", the mechanism is still being studied, and not everyone with hEDS has POTS. But when it's there, that racing heart on standing isn't anxiety and isn't unfitness. It's your circulation working against gravity with less structural help than usual.

3. The processing overhead: your brain on manual
Most people balance and hold posture automatically, using proprioception, your sense of where your body is in space. In hEDS, that sense is measurably less reliable.

So your brain has to recruit conscious effort for things other bodies do on autopilot. Stack that on top of pain, poor sleep, and a fast heart rate, and it compounds: fatigue worsens coordination, worse coordination demands more focus, and that focus burns more energy.

💬 From the community:
"People see me cancel and assume I'm flaky. What they don't see is the 45 minutes it took to get ready. Blow-drying my hair standing up. Negotiating with my ankles. Watching my heart rate climb past 110 before I'd even left the bathroom. I do math most people never have to: will the shower cost me the dinner? Will the dinner cost me tomorrow? I'm not lazy. I'm load-bearing."

🛑 The bottom line
Laziness is choosing to avoid effort. Fatigue in hypermobility is the physical cost of effort your body can't make efficient. You're not avoiding life. You're navigating it on a different energy budget than the people judging you.

👇 Do you get wiped out after "just" standing in a queue or cooking a meal? What does invisible effort look like in your day? Let's back each other up in the comments.

📌 Save and share this for the people who don't understand our energy budget. 🦓💙

Science communicator, not a clinician.
📚 Sources in the comments.

IN NEED OF REPAIR? Center for Independent Living Jacksonville is hosting a free wheelchair clinic for minor repairs and ...
07/17/2026

IN NEED OF REPAIR? Center for Independent Living Jacksonville is hosting a free wheelchair clinic for minor repairs and adjustments. Certified Durable Medical Equipment Specialists will be on hand to answer questions.

WHEN: August 6, 2026 @ 10:00 AM - 3:00 PM

WHERE: 2709 Art Museum Drive Jacksonville, FL 32207

RSVP: To request a wheelchair repair appointment, contact Teri Duke by calling CIL JAX at (904) 399-8484.

GRATITUDE: Special thanks to our event sponsor Action Disability Resources, Inc.

Zebra & Friends Social3rd Thursday of each month at 2 PMMonthly Ehlers-Danlos Support Group of Jacksonville social meet ...
07/14/2026

Zebra & Friends Social

3rd Thursday of each month at 2 PM

Monthly Ehlers-Danlos Support Group of Jacksonville social meet up at Lofts at San Marco East Resident lounge. Enter building using guest/delivery entrance by parcel lockers. Callbox code 027.

Snacks • Games • Conversation • Community

https://www.facebook.com/share/1D8wf1UJjK/?mibextid=wwXIfr

07/11/2026
Since 2018, our mission has been to support individuals and families affected by Ehlers-Danlos syndrome (EDS), hypermobi...
07/11/2026

Since 2018, our mission has been to support individuals and families affected by Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorders (HSD), and related comorbidities through education, community, and outreach. We officially became a Florida nonprofit in 2019 and proudly welcome not only those in the Jacksonville area, but also people from across Florida and beyond who come to Jacksonville for medical care.

As a member of our community, you have access to:
• Monthly educational meetings with guest speakers (held on Zoom on the first Saturday of each month at 1:00 PM ET)
• A welcoming private Facebook discussion group
• Our recommended provider list
• Monthly in-person Zebra & Friends Social
• A supportive community that understands the challenges of living with EDS

Learn more or connect with us:
Website: https://www.edsjacksonville.org
page: https://www.facebook.com/EDSjacksonville/
Private Facebook Group: https://www.facebook.com/groups/371654683684562
Instagram: https://www.instagram.com/edsjacksonville/
YouTube: https://www.youtube.com/
TikTok: https://www.tiktok.com/

Monthly Zoom Meeting
First Saturday of each month at 1:00 PM ET
Zoom Link:
https://us02web.zoom.us/j/83537445568
Meeting ID: 835 3744 5568
Passcode: 714391

Zebra & Friends Social
Third Thursday of each month at 2:00 PM
Lofts at San Marco East – Resident Lounge
3036 Philips Hwy
Jacksonville, FL 32207
Please enter through the guest/delivery entrance using callbox code 027.

Whether you're newly diagnosed, seeking answers, or have been living with EDS, HSD or related conditions for years, we're glad you're here. Thank you for being part of our community, and we look forward to continuing to support one another. --Rachel Goodman, President & Founder

Monthly social meet up at Lofts at San Marco East Resident lounge.  Enter building using guest/delivery entrance by parc...
07/09/2026

Monthly social meet up at Lofts at San Marco East Resident lounge. Enter building using guest/delivery entrance by parcel lockers. Callbox code 027.

Zebra & Friends Social

📅 3rd Thursday of each month • 2 PM
✨ Open to ALL

Snacks • Games • Conversation • Community
Sponsored by B&B Healing Hands LLC & EDS Support Group of Jacksonville.

07/06/2026

Address

Jacksonville, FL
32099, 32201–32212, 32214–32241, 32244–32247, 32250, 32254–32260, 32266,

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