Meeting Sunday, Nov. 12, 2017 West Babylon Panera Bread 2 PMWe hope you'll join us in the back private meeting room to collaborate on how to make our group stronger and better meet your needs. Bring meeting topics you would like to see covered next year. We will also hold an open forum where you can share whatever is on your mind. Feel free to ask questions, share your struggles, or share interesting information or helpful tips.
We invite you to come out, have some coffee or a snack, meet and talk with people who understand in a welcoming environment.
Saturday August 12, 2017 at 1:00P.M. in Setauket.We had our first outdoors social meeting and we discussed supplements and natural cures that have helped.
Sunday March 26, 2017, from 1:00–3:30 P.M. in Setauket.Pain management remains a struggle for many who live with E.D.S. We learned about the pain management program at the Cleveland Clinic and discussed practical ways to not let pain control our lives.
Saturday, December 10, 2016 in West Babylon Panera Bread 3–6 PM
Meeting on Saturday, August 13, 2016 at the NYIT Old Westbury campusLauren Stiles, president of Dysautonomia International, gave a talk on POTS and Dysautonomia–Common Comorbidities with Ehlers-Danlos Syndrome
You can view this in our video section (hamburger menu on mobile or left nav bar).
Social Meeting on Saturday, July 16 in Westbury, NYWe met for an early dinner at Dave and Buster's at the same time the awareness rally is being held at the EDS conference in Baltimore.
Directions to Dave & Buster's.
Meeting on Sunday, June 26 in W. Babylon, NYWe met in a private room at the back of the West Babylon Panera Bread from 2 – 5 PM.
We were happy to welcome new members to our growing support group. We discussed the various ways we deal with chronic pain.
Meeting on Sunday, May 15 in Huntington, NYWe discussed techniques for dealing with doctor offices and how to deal with frustrating doctor visits. We also shared a number of life hacks (practical suggestions) for EDS patients.
View our list of practical suggestions
Meeting on Sunday, April 17 in Huntington, NYWe welcomed some new members, shared resources, and contributed to an awareness campaign which highlights how long it takes for patients to get diagnosed with EDS. While we all have things we struggle with, we can also have reasons to be greatful. Here are a few that were shared.
Meeting on Sunday, March 13 in Setauket, NYSpeakers: Dr. David Tegay, geneticist and physical therapist, Shari Gessner, DPT, from the new NYIT EDS treatment and research center.
This was our best attended meeting. We have video recordings available in our videos section.
Meeting on Sunday, November 8 in Setauket, NYWe welcomed a couple of new members and discussed what we might like to see in a local EDS center.
Meeting on Sunday, July 26, 2015 in Setauket, NYWe learned that people with EDS often have poor proprioception, especially if they have flat feet. People with flat feet are not able to make appropriate use of the information transmitted from the nerves in the feet, so without seeing the ground they may fall.
Proprioception allows us to keep our balance even without seeing the ground; physical therapy can help improve proprioception.
We welcomed a couple of new members of the group and discussed physical therapy options.
The Dysautinomia International conference provided useful information for us. Slides from the presentation are available in our resources section.
Meeting on Sunday, May 31, 2015 at 12:30 PM in Huntington Station, NYWe welcomed some additional new members and discussed other ideas for awareness.
Check out this brochure for EDS awareness.
Meeting on Sunday, March 8, 2015We welcomed a number of new members, including some young people. A number of practical suggestions were shared (we should collect these into a page for reference).
Meeting on Sunday, January 25, 2015The theme was outreach and planning for the future. May is EDS awareness month.
Meeting on Sunday, November 16, 2014
Guest speaker: Dr. David Tegay, a geneticist with EDS experience
A considerable amount of valuable information was shared.
Meeting on September 21, 2014We introduced a few new members and we discussed some highlights from the TCAPP conference.
Slides from the 2014 TCAPP conference were shared with the group.
Videos from the 2014 TCAPP conference are now available too.
Meeting on July 19, 2014
Members of our local group were given a emergency alert wallet card. If you would like, you can download a copy of this card and print it yourself from the EDNF site.
Members that attended the annual EDS conference shared some highlights. Check the videos and resources tabs (on the left) for some video and slide presentations from the conference. Table of contents below.
2014 EDNF annual conference content available!Three videos have been released:
- If You Can't Connect the Issues, Think Connective Tissues - Heidi A. Collins, MD
- Ehlers-Danlos Syndrome Update 2014 - Claire A. Francomano, MD
- Breaking the Cycle of Chronic Pain/Poor Sleep/Depression/Fatigue - Alan G. Pocinki, MD
Here are the presentations from this year's conference:
- Temporomandibular Joint and Cervico-cranial Instability in the EDS Patient
- Comorbidities: A Critical Sum Handout
- Coordination of Care in Adults with EDS-HT
- The Empowered Patient: Ways You Can Get the Most From Your Medical Team
- Vascular Ehlers-Danlos in the Pediatric Population
- Current Understanding of the Natural History of Ehlers-Danlos Syndrome Type IV
- What 350 HEDS Patients Taught me in 2013!
- GI Disorders in Children with Hypermobility Syndrome
- Physical Therapy: Restorative Rehabilitation Based on Holistic Whole-body Approach
- Genetics and Inheritance of Ehlers-Danlos Syndromes
- Orthopaedic Considerations in Ehlers-Danlos and other Hypermobility Syndromes
- Connecting the Dots Between Ehlers-Danlos Syndrome and Related Conditions
- Compression Supports for Pain Relief and Stability
- EDS Teen Program
- Ehlers Danlos Syndrome & Headache
- Proving the Obvious: Next Steps for the Demystification of Ehlers Danlos Hypermobility Type
- Ehlers-Danlos Syndrome Update 2014
- Center for Ehlers-Danlos Syndrome Research at Baylor College of Medicine
- Too Tired: EDS and Fatigue
- Mast Cell Activation Syndrome
- Breaking the Cycle of Chronic Pain, Poor Sleep, Depression, and Fatigue