#ednf

[strengthflexhealtheds]

2015 EDNF Learning Conference - Our Stories of Strength Silent Auction Donation

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[spoonsandstripes]

“Currently voting on what name we should use for what is currently known as Hypermobile #EhlersDanlos. #ItsOurTime”

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. I’m 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 renaming “hypermobile” 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 I’m so excited! 

[edswellness]

Bring on 2016!

Bring on 2016!

Me and my BFF on Thanksgiving

So, this year has been pretty amazing in so many ways. There’s been plenty of ups and downs, but a lot of incredible achievements and I can’t wait until next year.

I can honestly say that I don’t think that I could have worked harder than I did this past year.

Yes, many sacrifices have been made and there’s a ton more I’ve learned, but I’m grateful…

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[edswellness]

Updates - Wellapalooza 2015, EDS Ride for a Cause and contest winner annoucements!

Updates – 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 haven’t been able to share them, because I haven’t had the time to do final edits and then post. All good content and so much I want to share, but … we have two events coming up next weekend, other…

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[hypermobileyogi]

Taking time off away from it all

Taking time off away from it all Time away from it all — what I need right now.  So, I’m taking a break from volunteer work, work work, house work, website work and all work. I have a ton that I’ve been working on and a ton to do, but my babies and family need me.  I need me.  I’m going to regroup, recharge and rest.  Rest is hard for me, but I have to do it.  Or, I’m going to try.  I will be…

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[hypermobileyogi]

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 year’s #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 year’s…

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[hypermobileyogi]

May is National Ehlers-Danlos Syndrome Awareness Month

May is National Ehlers-Danlos Syndrome Awareness 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.  However, based upon…

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[spoons-and-blow-torches]

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