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The Ehlers-Danlos Society
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Global Learning Conference 2016 early bird registration has been extended to June 7! http://bit.ly/EDSconference2016

Scholarship applications will be available later this week.

The general schedule is sessions starting on Thursday afternoon (with the Welcome Reception that evening), sessions all day on Friday including during the provided lunch, and Saturday (again with a lunch session) until mid-afternoon. As this year the conference is centered on presenting the new categorized diagnostic criteria and treatment guidelines, most are general sessions presented to everyone. There will be a separate Young Zebras program.
Rate Type, Early Bird, Early Bird, Regular, Regular. Member, Non-Member, Member, Non-Member. Full Conference (Age 18+), $345.00, $400.00, $430.00, $490.00. Friday One Day, $160.00, $190.00, $215.00, $245.00. Saturday One Day, $160.00, $190.00, $215.00, $245.00. Kid (Age 5-10), $230.00, $230.00 ...
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Bags are packed, travel underway or about to be. We converge on New York City tomorrow, and the symposium starts Tuesday morning. The future of EDS is on its way!
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"Adam's journey began a year and a half ago.

"'He was diagnosed with EDS, Ehlers Danlos Syndrome which is a genetic tissue disorder,' said Adam's dad, Tony. Adam is Classic Type. He was never diagnosed with EDS as a kid." 
At 15-years-old-and in the past few months-his life has been turned upside down. Adam Inzauro is recovering from heart surgery, being malnourished, and being diagnosed with a rare tissue disorder. He will fight it the rest of his life.
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Listen to the first official charity single for The Ehlers-Danlos Society by the wonderful STINA.

‪#‎ItsOurTime‬ ‪#‎TheEhlersDanlosSociety‬ ‪#‎EDSAwareness‬

We are very proud to announce that the single “It’s Our Time” by STINA has been chosen as track of the week by BBC radio in the UK.

STINA will be performing the song live in the studio on Saturday, 30 April, and to talk about EDS Awareness Month and the launch of the new charity, The Ehlers-Danlos Society.

The song will be played every day this week at the times below. All times listed are UK GMT.

You can listen back to today’s show and hear the song at 26:17: http://www.bbc.co.uk/programmes/p03qpl90

Stay tuned all week at http://www.bbc.co.uk/threecountiesradio:

• Tuesday, 26 April: Nick Coffer Show, approximately 14.15pm GMT
• Wednesday, 27 April: Roberto Perone, approximately 16.30pm GMT
• Thursday, 28 April: - Breakfast show, approximately 06.45am GMT
• Friday, 29 April: JVS, approximately 11.30am GMT
• Saturday, 30 April: Breakfast show, live performance and interview.

Please show your support by liking her page STINA (https://www.facebook.com/stinamusic/)! “It’s Our Time” is set for release on iTunes and Spotify in May.
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Today is International Nurses Day and we are so grateful to the attentive nurses who care for and support those in hospital with Ehlers-Danlos syndrome.

Being aware of Ehlers-Danlos syndrome and the manifestations of each type, can ensure that patients are correctly monitored and treatment administered safely.

For more information on Nursing in Practice visit: http://bit.ly/1Opiq4k

#Nursing #InternationalNursesDay #EhlersDanlosSyndrome #hypermobility #hypermobile #vascular #vascularEDS #EDS
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Webinar!  The Ehlers-Danlos Society and Bauerfeind USA​ are pleased to announce a webinar, "Managing POTS with Compression Hose" presented by Erin Grigsby on Monday, May 9, from 8-9 pm EDT. To register, please visit https://attendee.gotowebinar.com/register/6174261740391328001

This webinar is tailored for patients and family members interested in learning more about EDS, but all are welcome.
By clicking this button, you submit your information to the webinar organizer, who will use it to communicate with you regarding this event and their other services. Close Your information will be submitted to the webinar organizer, who will use it to communicate with you regarding this event ...
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One inch, one stumble, one after another; one minute, one hour, one day at a time; and our future is changed.
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The intention here is not to say EDSers are crazy, but rather: that our many EDS problems are associated with psychiatric disorder, not that those disorders cause EDS or the EDS symptoms involved. This abstract (from October) is posted as ammunition against the growing tendency of the medical establishment to say, just live with your pain. Clearly it's not EDS itself, because joint hypermobility and our skin issues are NOT associated with psychiatric disorders. And clearly untreated pain, untreated migraines, untreated fatigue, are not an answer to improving our psyches.

"Psychiatric disorders in Ehlers–Danlos syndrome are frequent, diverse and strongly associated with pain

"Abstract:

"Ehlers–Danlos syndromes (EDS) are a heterogeneous group of hereditary connective tissue disorders characterized by joint hypermobility, widespread musculoskeletal pain and tissue fragility. Psychiatric disorders and psychosocial impairment are common, yet poorly characterized, findings in EDS patients. We investigated the frequency and types of psychiatric disorders and their relationship to systemic manifestations in a cohort of 106 classic and hypermobility type EDS patients. In this retrospective study, extensive medical chart review was performed for patients referred at two genetics clinics who were diagnosed with EDS. Statistical analysis was undertaken to determine the frequency of psychiatric disorders and association with systemic findings. Psychiatric disorders were found in 42.5 % of the EDS cohort, with 22.7 % of patients affected with 2 or more psychiatric diagnoses. Anxiety and depression were most commonly reported, with frequencies of 23.6 and 25.5 %, respectively. A variety of other psychiatric diagnoses were also identified. Abdominal pain [odds ratio (OR) 7.38], neuropathic pain (OR 4.07), migraines (OR 5.21), joint pain (OR 2.85) and fatigue (OR 5.55) were significantly associated with the presence of a psychiatric disorder. The presence of any pain symptom was significantly associated with having a psychiatric disorder (OR 9.68). Muscle pain (OR 2.79), abdominal pain (OR 5.78), neuropathic pain (OR 3.91), migraines (OR 2.63) and fatigue (OR 3.78) were significantly associated with having an anxiety or mood disorder. Joint hypermobility and the classic dermatological features of EDS showed no significant association with having a psychiatric disorder. Our findings demonstrate a high frequency of psychiatric disorders and an association with pain symptoms in EDS."

http://link.springer.com/article/10.1007%2Fs00296-015-3375-1
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This is good. Thanks for sharing.
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"On Wednesday, researchers unveiled in NATURE a significant improvement — a new CRISPR system that can switch single letters of the genome cleanly and efficiently, in a way that they say could reliably repair many disease-causing mutations.
"Because of 'the cell’s desperate attempts' to mend its genome, said Harvard University biologist George Church, 'what often passes as "genome editing" would more appropriately be called "genome vandalism,”' as the cell inserts and deletes random bits of DNA where CRISPR cuts it.
"Because the new version of CRISPR avoids that mess, it 'offers a huge step forward,' said Church, who was not involved in the discovery, and whose 2013 paper helped launch the CRISPR frenzy. 'It is arguably the most clever CRISPR gadget to date.'”
A new CRISPR system can switch single letters of the genome efficiently, in a way that scientists say could reliably repair many disease-causing mutations.
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In their circles
64 people
Have them in circles
335 people
Melvin Menezes's profile photo
Chandra Welter's profile photo
Robin Marr's profile photo
Trisha Gibson's profile photo
davena parsons's profile photo
Susan Vaow's profile photo
Rebecca “Becca” P.'s profile photo
Lisa Peden's profile photo
Adriana Alburger'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