Long Island – EDS Group

DYSAUTONOMIA PATIENT & PROVIDER EDUCATION DAY SATURDAY, JANUARY 26, 2019 at STONY BROOK UNIVERSITY

NYIT Patient & Provider Symposium on Tuesday, November 27, 2018 8:30am–4:45pm

Saturday, July 28 from 1:00 – 4:00 in Bay Shore

We hope you’ll join us to meet with others who understand EDS in a supportive environment. We are meeting in the Bay Shore-Brightwaters Public Library.
Please note that we are starting an hour earlier than last month. Please register here.

Previous Meetings

Saturday, June 23 from 2:00 – 4:00 in Bay Shore

Rebecca lead a discussion about positive things we do to help ourselves stay as healthy as possible and to stay positive. People in the group shared what they do for exercise and we were all encouraged to keep a good routine.

May 26 from 1:30 – 4:30 in Dix Hills

Diana F. lead a supportive discussion. We discussed the upcoming medical conference where we can hear from experts in the field and have the chance to ask them questions. Since no one in our area claims to be an "EDS expert," we have been wokring as individuals and as a group to build the expertise of local practitioners. For instance, it's difficult to find an orthopedist who specializes in EDS. The most important thing is to find a great doctor with some EDS familiarity. A great doctor is willing to learn.

Sunday, Nov. 12, 2017 West Babylon Panera Bread 2 PM

We had a large turnout including a few new members.

Saturday August 12, 2017 at 1:00P.M. in Setauket.

We had our first outdoors social meeting and we discussed supplements and natural products 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 campus

Lauren 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, NY

We 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, NY

We 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, NY

We 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, NY

We 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, NY

Speakers: 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, NY

We 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, NY

We 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, NY

We welcomed some additional new members and discussed other ideas for awareness.
Check out this brochure for EDS awareness.

Meeting on Sunday, March 8, 2015

We 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, 2015

The 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, 2014

We 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

Slides for many of the presentations are available at ednf.org.
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

Meetings are held every month for the personal and medical edification of members while advancing awareness, detection, and treatment on Long Island. We will be meeting at the same time and location on the fourth Saturday of the next few months.