May 11, 2016
2015 EDNF Learning Conference - Our Stories of Strength Silent Auction Donation
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2015 EDNF Learning Conference - Our Stories of Strength Silent Auction Donation
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Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
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āCurrently voting on what name we should use for what is currently known as Hypermobile #EhlersDanlos. #ItsOurTimeā
Guys I am so psyched about the international Symposium that wrapped up today! They will be redoing the typing and diagnostic criteria for EDS which is sooooo badly needed, and they will publish a universal treatment protocol in medical journals all over the world. Iām so excited to see so much of what we endure every day being incorporated into the official definition. And the cherry on the top? That they are at least considering renamingĀ āhypermobileā type! They want a name that better reflects the multi-systemic nature of that type of EDS, and also to avoid confusion because hypermobility is associated with *all* types of EDS. Anyway, they will be presenting their findings at the July patients conference and Iām so excited!Ā
Bring on 2016!
Bring on 2016!
Me and my BFF on Thanksgiving
So, this year has been pretty amazing in so many ways. Thereās been plenty of ups and downs, but a lot of incredible achievements and I canāt wait until next year.
I can honestly say that I donāt think that I could have worked harder than I did this past year.
Yes, many sacrifices have been made and thereās a ton more Iāve learned, but Iām gratefulā¦
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Updates - Wellapalooza 2015, EDS Ride for a Cause and contest winner annoucements!
Updates ā Wellapalooza 2015, EDS Ride for a Cause and contest winner announcements!
Where to begin? First, things have been crazy, like really crazy busy. I have a bazillion blog posts written and havenāt been able to share them, because I havenāt had the time to do final edits and then post. All good content and so much I want to share, but ā¦ we have two events coming up next weekend, otherā¦
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Taking time off away from it all
Taking time off away from it all Time away from it all ā what I need right now. Ā So, Iām taking a break from volunteer work, work work, house work, website work and all work. I have a ton that Iāve been working on and a ton to do, but my babies and family need me. Ā I need me. Ā Iām going to regroup, recharge and rest. Ā Rest is hard for me, but I have to do it. Ā Or, Iām going to try. Ā I will beā¦
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Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
Free to watch ā¢ No registration required ā¢ HD streaming
Update on the 2nd Annual #EDSRideForACause on May 30th, 2015!
Update on the 2nd Annual #EDSRideForACause on May 30th, 2015!
Join us for a great event raising awareness for Ehlers-Danlos Syndrome (EDS) just as we wrap-up National EDS Awareness Month in May!
Last yearās #EDSRideForACause at Zengo Cycle in Bethesda, MD was a great success, so we are doing it again and making it even better this year! (See link below for pictures & details fromlast yearāsā¦
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May is National Ehlers-Danlos Syndrome Awareness Month
May is National Ehlers-Danlos Syndrome AwarenessĀ Month
May is National Ehlers-Danlos Syndrome Awareness Month
What is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders that can cause a wide variety of symptoms throughout different body systems; each unique in presentation to the individual. Ehlers-Danlos Syndrome is classified as a rare disorder affecting 1:5000 people. Ā However, based uponā¦
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Hey, guys! I happen to come across this on the EDNF Facebook page and I thought I'd share it here in case it helps any of my fellow spoonies out there. 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