Ehlers-Danlos Support Group of Jacksonville

10/15/2026

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 Virtual Meeting on the first Saturday of each month at 1:00 PM ET
• Monthly in-person Zebra & Friends Social on the third Thursday of each month at 2pm
• 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
• A community of people who understand many of the challenges that come with EDS, HSD, and related conditions

Monthly Virtual 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

10/03/2026

"Why does that hurt? I barely touched you."

For many people with hypermobile EDS (hEDS), pressure that other people shrug off can hurt. Research suggests that is not an exaggeration. It can be measured.
In a 2015 study, a researcher who did not know who was in which group pressed a small device into 14 spots on the bodies of 23 women with hEDS and 23 women without it. On average, the hEDS group felt pain at a little over half the pressure. That held even in spots where they had no ongoing pain. A 2017 study found the same pattern in children with hypermobility disorders.

A 2022 study of 20 women with hEDS added another piece. When the same pressure was repeated 10 times, pain built up more in the hEDS group than in the comparison group.

Researchers call this generalized hyperalgesia, and many think it reflects central sensitization: a nervous system that has become more responsive to pain signals over time.

That is not the same as "it's in your head." Joints, tissues and nerves are still real sources of pain, and a French study found nerve-type pain was common in people's most painful joint. Sensitization is a change in how the whole system turns the volume up.

These are small studies, mostly of women, and they describe groups rather than any one person's pain.

If a hug, a firm handshake or a blood pressure cuff hurts more than it seems it should, that is a documented pattern, and it is worth describing to your care team in exactly those words

10/03/2026

10/03/2026

Voting access is about more than getting through the door.

People with disabilities have rights throughout the voting process, including access to polling places and voting equipment, assistance when needed, and the ability to vote privately and independently.

Our new Florida Accessible Voting Field Guide blog brings that information together in one place. It covers voting rights, planning for your access needs, recognizing accessibility barriers, and what you can do if something is not accessible.

Your Right to Vote Includes Access.

Link in the comments.

09/15/2026

Zebra & Friends Social
Hosted by B&B Healing Hands & Ehlers-Danlos Support Group of Jacksonville
3rd Thursday of each month • 2 PM

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

Open to ALL • Snacks • Games • Conversation • Community
Event page: https://www.facebook.com/share/1C8UxSNPu4/

09/12/2026

Zebra & Friends Social
3rd Thursday of each month • 2 PM

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

Open to ALL Snacks • Games • Conversation • Community
Event page: https://www.facebook.com/share/1C8UxSNPu4/

08/24/2026

Get ready for an evening of laughs, friendly competition and great company! Whether you’re a seasoned game champion or just in it for the fun, there’s a seat at the table for everyone.

WHAT
Adaptive Game Night w/ Brooks Rehabilitation Adaptive Sports & Rec (UNLOCKED Adaptive Game Night) This month: Board Games!

WHEN
Wednesday, August 26
6 - 8 p.m.

WHERE
Brooks Rehabilitation
Assembly 1 & 2
3599 University Blvd. S.
Jacksonville, FL 32216

HOW
Sign up here https://www.signupgenius.com/go/409044CAEAC28A64-64866939-game?useFullSite=true #/

08/24/2026

Get ready for an evening of laughs, friendly competition and great company! Whether you're a seasoned game champion or just in it for the fun, there's a seat at the table for everyone.

WHAT
Adaptive Game Night w/ Brooks Rehabilitation Adaptive Sports & Rec (UNLOCKED Adaptive Game Night) This month: Board Games!

WHEN
Wednesday, August 26
6 - 8 p.m.

WHERE
Brooks Rehabilitation
Assembly 1 & 2
3599 University Blvd. S.
Jacksonville, FL 32216

HOW
Sign up here https://www.signupgenius.com/go/409044CAEAC28A64-64866939-game?useFullSite=true #/

CIL Jacksonville