March 2009
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February 2009
24 posts
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Rare Disease Day - February 28, 2009
Sign the petition to help give visibility to rare disorders.
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“The brain of a chronic pain patient is not simply a healthy brain processing...”
– “Recent studies have demonstrated that chronic pain harms cortical areas unrelated to pain, but whether these structural impairments and behavioral deficits are connected by a single mechanism is as of yet unknown. Here we propose that long-term pain alters the functional connectivity of...
Lift For Life event- March 7th at Colgate University to benefit the EDNF: http://tinyurl.com/b7yt84
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Colgate University Athletics - Football Team To... →
HAMILTON, N.Y. (2/24/09) – The Colgate football team will hold its second annual Lift For Life event on Saturday, March 7 at the Sanford Field House at 6 p.m. The event will help raise funds and awareness for Ehlers-Danlos Syndrome.
Ehlers-Danlos syndrome (EDS) is a group of inherited disorders that affect your connective tissues – primarily your skin, joints and blood vessel walls. With EDS,...
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“On a recent visit to her new spacious and cozy home, however, Mrs....”
– Firm Faith leads Frisch to pen book in face of grave illness
Jackie Frisch has EDS and was featured on Extreme Home Makeover a few months ago. Her book isn’t about Ehlers Danlos, but it she’s raising awareness by making it a part of the discussion whenever she can.
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For Uninsured Young Adults, Do-It-Yourself Health... →
Not directly related to EDS, but interesting nonetheless.
EDS NYC member-generated Doctor Map now available to members. Email for access.
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“The doctor said, ‘You wouldn’t live through a major accident because you would...”
– 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...
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
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Flashback: EDS local news segment. →
A few years back, one of our members approached a local news affiliate about doing a segment on EDS. The above link is not the original news item, but the video is available there and worth a watch. In addition to being a vocal advocate for Ehlers-Danlos Syndrome, Gerri is the Executive Director of Special Citizens, an organization supporting those dealing with autism.
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.
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“Patients with joint hypermobility problems should even avoid activities like...”
– Using Physical Therapy to Treat the Joint Hypermobility of Ehlers-Danlos Syndrome
Cursory, but links to good sources for additional information.
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Ehlers-Danlos Syndrome: Diet Considerations →
One patient’s take on the incredibly complex nutritional difficulties we face.
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Hypermobility increases risk of osteoporosis | The... →
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Latest EDSNYC meeting minutes are up! Members can view them here: http://docs.edsnyc.org
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The Vocabulary of EDS. →
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“The purpose of this study is to examine cardiovascular and musculoskeletal...”
– Manifestations of Heritable Disorders of Connective Tissue - Full Text View - ClinicalTrials.gov
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EDS NYC in a nutshell.
We’re a group dedicated to supporting those affected by Ehlers-Danlos Syndrome. We raise funds to support the initiatives of our group, contribute to the EDNF and help fund desperately needed genetic research. We’ve been around for a few years and have grown more rapidly as Ehlers-Danlos pushes its way to the front of the medical community, leading to more frequent diagnosis....