EDS NYC is a 501c3 organization dedicated to supporting those coping with Ehlers-Danlos Syndrome in the Metro New York City area. If you'd like more information, Email us.

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The doctor said, ‘You wouldn’t live through a major accident because you would bleed to death, and if you were lucky enough to live from the operation, you might die from infection’

The Times West Virginian - ‘I’m afraid not to exercise’

This article focuses on the role of exercise in cardiovascular health. They interviewed an EDS patient who had suffered a heart attack at 53, followed by a rupture during pacemaker installation. Though the writer (erroneously) underestimates the role of Ehlers Danlos in heart complications, EDS patients can read between the lines here. They don’t tell us we need regular echocardiograms for nothing.

EDS NYC is now on Facebook: http://apps.facebook.com/causes/220438 (thanks to @shangsm)

Our Firstgiving page has been updated! Follow this link to donate directly to EDS NYC: http://www.firstgiving.com/edsnyc

Join the EDS NYC community on Change.org: http://tinyurl.com/b2n6vb

EDNF Pediatric One-Sheet available here: http://tinyurl.com/alac8n

Connecting people dealing with Ehlers Danlos Syndrome / EDS.

Patients with joint hypermobility problems should even avoid activities like bowling, which involves lifting heavy bowling balls and locking the elbow and shoulder joints.

Using Physical Therapy to Treat the Joint Hypermobility of Ehlers-Danlos Syndrome

Cursory, but links to good sources for additional information.