Resources for Patients
- Meetup: https://www.meetup.com/eds-chicago-support/
Saturday Zoom meetings are listed here with links. - Events such as both the Saturday Zoom meetings and the Tuesday Evening Zooms are listed in the Chicago EDS FB Group: https://www.facebook.com/groups/173642652824
(You will have to join the group and answer the questions, etc, as it is a private group. One of our admin will contact you.)
Tuesday evening meetings are available through Facebook only! - Patient Recommended Provider List (updated 3/25/2025)
- The Connective Tissue Coalition can provide more information about Ehlers-Danlos Syndromes and related conditions: https://www.connectivetissuecoalition.org/
- Samples of Braces & Assistive Devices Photo Gallery
Dysautonomia Resources (in review)
- Illinois Support group with Dysautonomia International: https://www.facebook.com/groups/DysautonomiaInternationalILSupport
- The CHOP Protocol for POTS (based on perceived exertion, not heart rate for POTS patients) is a key part of PT for most POTS patients. https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf
- Dysautonomia International’s physician list: http://www.dysautonomiainternational.org/page.php?ID=14
- Lorimer Moseley – has great materials educating the public about the neuroscience of pain.
- Explain Pain Handbook
- Kristin Neff studies self-compassion, website has great practices. https://self-compassion.org/
- Tara Brach is a meditation teacher who has hypermobility and combines her western psychology training with Buddhist principles. https://www.tarabrach.com/Questions (in repsonse to the Dysautonotmia list)? Madelyn.bagby@gmail.com Resources courtesy of M. Bagby
(Edits and updates started by Leisl on 11/2/2024. Last update 2/7/2025.)