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Ehlers-Danlos National Foundation
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"'You know, it's that invisible nature of an illness that people don't understand,' says Wayne Connell, the founder and head of the Invisible Disabilities Association. …When a disability isn't immediately obvious, others — at work, school or even at home — sometimes doubt it exists and accuse those who suffer from invisible conditions of simply angling for special treatment." 
In employment disability discrimination charges filed between 2005 and 2010, the most commonly cited disabilities were those not immediately obvious to others.
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The webinar from March 5, "Compression Supports for Pain Relief and Stability," is available on Bauerfeind's YouTube channel https://www.youtube.com/channel/UCibPw0e_x6fL2zHGKxv5SRA — and the 20% discount has been extended through April!
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Bauerfeind USA (http://www.bauerfeindusa.com/en/home.html) is offering a 20% discount off your order during March! Visit http://b2c.bauerfeindusa.com/ednf and use the discount code EDNF032015.
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Bauerfeind USA (http://www.bauerfeindusa.com/en/home.html) is offering a 20% discount off your order during March! Visit http://b2c.bauerfeindusa.com/ednf and use the discount code EDNF032015.
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Today from 7–9pm ET, there is a free webinar, "Compression Supports for Pain Relief and Stability," presented by Erin Grigsby (Physical Therapist/Bauerfeind Product Specialist).

To participate in the webinar, please reserve your free access code at http://bit.ly/EDNFCompress. This webinar is tailored for patients and family members interested in learning more about EDS, but all are welcome. View more information on our website at www.ednf.org/webinars.
Join us on Thursday, March 5, 2015 at 7pm ET as Erin Grigsby, Bauerfeind Product Specialist, explains how compression supports can greatly improve the lives of those with EDS. Required field. First Name. Last Name. Email Address. By clicking this button, you submit your information to the ...
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"Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.

"Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.

"The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families."
A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. One rare disease may affect only a handful of patients in the EU (European Union), and anothe
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In their circles
66 people
Have them in circles
259 people
Heather Ashley's profile photo
Jayna Leone's profile photo
Shannon Goheen's profile photo
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Christine Hale's profile photo
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"Happiness, knowledge, not in another place but this place, not for
another hour but this hour…" (Walt Whitman)
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Evenings with Genetics seminar sponsored by the Department of Molecular and Human Genetics at Baylor College of Medicine and Texas Children’s Hospital 

Tuesday, April 14, 2014 
Ehlers-Danlos Syndrome – Hypermobility Type: Keeping Active!

Dr. John Belmont, Pediatric Genetics, Texas Children’s Hospital
Dr. Carl Gelfius, Physical Medicine and Rehabilitation Department, Texas Children’s Hospital

          6:30 pm   Light Refreshments
7:00 - 8:15 pm  Seminar

Registration is required. Seminar attendance is FREE.
Please visit bcm.edu/eveninggenetics or call 832-822-4280.
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"New research shows that seven compounds of the countless found in spider venom block a key step in the body's ability to pass pain signals to the brain. The hunt for a medicine based on just one of these compounds, which would open up a new class of potent painkillers, is now a step closer according to new research published in the British Journal of Pharmacology." 
New research shows that seven compounds of the countless found in spider venom block a key step in the body's ability to pass pain signals to the brain.
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"It is in the darkest night that the light we are shines brightest.” (Matthew Stover) Thank you all for finding your way here, for helping light up our nights. I keep learning how to live a better life because of you.
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Here we go again. "But despite the negative side effects, there are also numerous upsides to having EDS, Smith said. 'I joined a circus when I was 17, and I’ve traveled the entire world. It’s just been absolutely phenomenal.'”

One of the first doctors I saw after I was diagnosed told me, "People like you are usually in the circus." It's not a happy memory. I'm grateful EDS is getting attention, and if you write 20/20, be sure to express that, too. But there is much in error when they focus disease awareness on an individual who is clearly not representative of the experience most of us have with EDS, and even trivialises a syndrome that in some is fatal.
Daniel Browning Smith holds the Guinness World Record for most flexible person.
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Post Script: I disagree with his statement of 'upside to having EDS' - that was good luck. If we play our cards right and work hard, we can achieve anything. It has nothing to do with the 'upside of EDS', or we would have all joined the circus.
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"Bobby also had Ehlers-Danlos Syndrome, a disorder affecting the strength of his ligaments."
At 13, Bobby Leithauser is finally getting ready to go back to school after battling a mystery illness that turned out to be several...
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"Bobby’s mother says the lesson is to keep searching for answers, especially when your instincts tell you you’re not getting all the help you need." In our world of misunderstandings, I hope those words don't get lost. Great article :)
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People
In their circles
66 people
Have them in circles
259 people
Heather Ashley's profile photo
Jayna Leone's profile photo
Shannon Goheen's profile photo
Andrew McCluskey's profile photo
Christine Hale's profile photo
Catrina Sanford's profile photo
Stephanie Meg's profile photo
Debby Joy's profile photo
Terri Mitchell's profile photo
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Resources for those affected by Ehlers-Danlos syndrome
Introduction
Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos syndrome. Any medical information found here should be discussed with your doctors thoroughly before taking action. Established in 1985 by Founder Nancy Hanna Rogowski (1957 - 1995), we are a 501 (c) (3) Nonprofit Organization with thousands of members across America and around the world. Our volunteers and their families are the life blood of EDNF and make a huge difference to those affected by EDS.
Contact Information
Contact info
Phone
703-506-2892
Fax
703-506-3266
Address
7918 Jones Branch Drive Suite 300 McLean VA 2210