Connect Our Tissues! NYC EDS Awareness Photo Shoot and Social Event
Celebrate EDS Awareness Month 2018 at our EDS community social event
Washington Square Park
Sunday, May 20 from 2:00-4:00
Stand up and be counted! Connect Our Tissues in group photo session to raise awareness—globally.
We will have:
Free EDS Awareness T-Shirts, streamers, and signs
Group and individual photos
Medical students and doctors are invited
Long Island EDS Support Group
The Ehlers-Danlos Society
RSVP for T-shirt size:
and select your free T-shirt size and grant a photo release.
T-shirts will be provided to the first 100 registrants who arrive at the event before 3 PM.
If you RSVP
, we will have one waiting for you. However, no show, no tee.
Washington Square Park is in the heart of Greenwich Village in New York where 5th Ave ends at Waverly Place. Street parking is limited but there are underground garages in the area.
A, C, E and B, D, F, M to West 4th St
R, W to 8th St.-NYU
6 to Astor Place
1 to Christopher St.
In the event of rain we will hold the event at the American Museum of Natural History at Central Park West & 79th St. We will announce via email and web page EDS-NYC.com by 10 AM should plans change.
Somehow saying “Happy Rare Disease Day” doesn’t quite have a ring to it, does it?
Thanks to IOWA STATE UNIVERSITY for this great piece on a student with hEDS. A good one to share with friends, colleagues and family to bring some light to what we EDSers go through every day — not just on Rare Disease Day. If only!
I have been following Melanie Hartshorn’s story for quite some time.
She suffers from hEDS as well as severe CCI (cervial-cranial instability). Melanie has lived bed-bound, unable to lift her head due to constant dislocations. This has not stopped her. Melanie recently graduated from college, having taken all her classes and exams lying on her stomach on a gurney or bed.
Melanie had spinal fusion and Chiari surgery a few months ago in Barcelona. Although she had hoped to spend more time upright, has hit a setback with her physical therapy allocation funds and is now only able to spend a few hours upright daily.
Melanie is an extraordinary woman who has been very vocal and visible about about EDS in the UK media. She is an example of what all of us can accomplish despite our limitations. Please consider contributing to her Go Fund Me, if you are able.
To donate, visit www.gofundme.com/melanie-s-mission
Hello fellow zebras!
My name is Jen Ryan (hEDS) and Kurt has kindly “turned over the keys” to the site so that we can begin to revamp it.
The idea is to provide a steady stream of articles, information, links — and anything else we can thing of — to help you live better in NYC with Ehlers-Danlos Syndrome.
My four-year journey since finally being diagnosed with hEDS has been equal parts enlightening and taxing. We live with a difficult, intractable, mostly untreatable condition that manifests itself differently in each one of us. I am a member of every EDS message board or forum that the internet has to offer, and the vast majority of posts from people with EDS read like this:
- Doctors don’t listen to me.
- Nothing helps my pain.
- I am miserable and alone.
- Nobody believes me when I tell them I’m sick.
These are all unacceptable to me. Nobody with EDS should be miserable, alone, in pain or without compassionate care.
We are very lucky to live where we do. There are a lot of clinics and doctors in New York City who not only treat EDS, but who are willing and interested in learning about it. I have been in NYC emergency rooms where once I told the staff my diagnosis, every nurse, intern and resident came to see me, touch my skin and ask me questions. I have been helped by doctors who didn’t know what EDS was but ended up studying it — providing novel and helpful treatments. I have talked with fellow Zebras about their experiences and found a deep camaraderie through our similar struggles.
So lets do this together. Lets fight together for better understanding and care of EDS in New York City. We owe it to ourselves and to each other to make sure nobody with EDS suffers. We deserve happiness and good health. I promise that despite our unique challenges, both are possible.
Please check this space often for articles, links, new speakers for our lecture series and meet-ups. I look forward to the journey with all of you!
EDS Awareness month is upon us. Come join us at the May EDS-NYC local support group meeting Wednesday, May 1, 6:00 PM, at 1395 Lexington Avenue, room S100, New York, NY.
The agenda is to develop strategies to raise awareness among key constituencies such as:
- Informing doctors, and other healthcare providers
- Gaining media coverage
- Other awareness-related events
All are welcome, especially those who are not yet diagnosed but have questions.
The meeting is at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets. For transportation information, the nearest subway is the number 6, which stops at 96th St.
Please RSVP so we can estimate group size. Please include desired snack food for brainstorming at the meeting. I’ll pick up the most popular item, provided it is not lobster stuffed with caviar atop a pyramid of filet mignon.
Noted Allergist/Immunologist Dr. Anne Maitland spoke for almost 2 hours about mast cells, EDS, allergies versus hypersensitivity, and much, much more April 2, 2013.
So far the Ustream link is ready to go:
You need to create a Ustream account, but that’s easy or you can log in with Facebook.
The 24 minute segment, which currently is the bottom of the three segments on the list, is the first one. That starts with the introduction.
We are all extremely grateful to Dr. Maitland, who took so much of her time and was so generous with information. She mentioned that two years ago there really was no research on this mast cell activity, which makes this pretty cutting edge.
I hope to have the other copy of the video up in good time, but seeing the good quality of this one really does sap my current motivation.