Resources for Patients
If there is a provider listed below who does not wish to be included on this list, please submit a comment to let us know, and it will be removed. Listed currently in no particular order. Thank you! – March 2025
- 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! - The Connective Tissue Coalition can provide more information: https://www.connectivetissuecoalition.org/
- Samples of Braces & Assistive Devices Photo Gallery
Patient Recommended Provider List* (Updated March 2025**):
- Dr. Octavia Kincaid, Neurologist, Rush (Scheduling new patients well into 2026 at present.)
- Dr. David Dickerson, Pain Management, NorthShore/Endeavor in Skokie
- Dr. Victoria A. Brander, Physical Medicine and Rehabilitation, Global Health Partners at Northwestern, Chicago (Does not take insurance directly.) https://www.globalhealthpartnersnu.com/
- Dr. Alexandru Barboi, Neurologist (Now located in Indianapolis at IU Health as of summer 2024 – Can see patients in person or virtually from Illinois and Wisconsin, as he maintains his licenses in these states. Scheduling is now close to a year out.)
- Dr. Brad T. Tinkle, MD/PhD, Clinical Geneticist (Now located in Indianapolis.) https://www.drbradtinkle.com/
- Dr. Christina Laukaitis, MD/PhD/FACP/FACMG, Genetics/Hereditary Connective Tissue Disorders & Undiagnosed Conditions, CarleHealth, Urbana, IL
- Marsha Sorenson, Doctor of Optometry, Neuro-Optometry (https://www.visionrehabassociates.com/)
- Mary Kiolbasa, Occupational Therapist, NorthShore/Endeavor, Lincolnshire
- Dr. Leslie Yang, Gastroenterology, NorthShore/Endeavor, Evanston and Skokie
- Dr. Daniel Bohl, Orthopedic Foot and Ankle Surgeon, Midwest Orthopedics, Rush (https://www.danielbohl.com/)
- Dr. Goran Tubic, Pain Management, Bolingbrook & Hinsdale (https://www.chicagolandpainmanagement.com/)
- Dr. Alfonso J. Tarfur, Vascular Surgeon, NorthShore/Endeavor in Skokie
- Dr. Don Seidman, Pediatrician, Duly Health and Care in Elmhurst
- Robyn Seidman, MA, LCSW (Licensed Clinical Social Worker), Chicago (Uniquely knowledgeable about the chronic illness experience, EDS and its comorbidities. Offers a sliding scale if eligible.)
- Dr. Tim Kosiba, PT, DPT, NorthShore/Endeavor, Lincolnshire
- Dr. Shaun Phelan, PT, DPT, Physical Therapist, Oak Brook https://body,gears.com/location/physical-therapy-oak-brook/
- Dr. Shivi Jain, Hematology/Oncology, Rush, Chicago
- Dr. George Urban, Internist, Diamond Headache Clinic, Chicago
- Dr. Craig Smuda, MD/PhD, Rheumatology, UChicago Medicine AdventHealth Clinic, Bolingbrook
- Movement Physical Therapy, Chicago (Streeterville, River North, West Loop, and Ravenswood) https://www.movementphysicaltherapy.com/
- Dr. Joe Hanson, Chiropractor/Nutrition, Omnis Chiropractic Associates, Glenview
- Dr. Frank F. Tu, Gynecology, NorthShore/Endeavor, Skokie and Highland Park
- Dr. Darren Brenner, Gastroenterology, Northwestern, Glenview and Chicago
- Dr. Timothy C. Hain, Neurology, Northwestern, Chicago
- Dr. Neil Margolis, Neuro Developmental Optometrist, Visual Symptoms Treatment Center, Arlington Heights https://www.visualsymptomstreatmentcenter.com
- Lilian Holm, PT, DPT, Lillian Holm Wellness, Evanston https://www.lilianholm.com/
* Provider list not in any particular order (although may soon be separated into categories!) These are providers recommended by patient members of our Chicago EDS group. If the provider does not wish to be on our list, please leave a comment on one of our meeting posts and we will remove the name and information.
** As stated above, these are patient recommended providers. However, experiences will vary for each person/patient, so these providers may not be right for everyone! However, it is nice to have a list of providers who may be more EDS-knowledgeable than others!
** As stated above, these are patient recommended providers. However, experiences will vary for each person/patient, so these providers may not be right for everyone! However, it is nice to have a list of providers who may be more EDS-knowledgeable than others!
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.)