Month: May 2015

The story that made me cry ….

THIS story made me cry ….. I Was Just A Typical Teen Who Loved To Dance Until I Discovered The Rare Disorder Responsible For My Crazy Flexibility Was Also Destroying My Body – published today by Seventeen Magazine This post by Seventeen Magazine via their Facebook page, tells that all-to-familiar story of a typical teenage girl’s …

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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 …

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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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Our SOS Media, LLC releases debut anthology in the Our Stories of Strength™

Our SOS Media, LLC releases debut anthology in the Our Stories of Strength™ series featuring over 50 stories from people living with Ehlers-Danlos Syndrome in conjunction with Ehlers-Danlos Syndrome awareness month. Ehlers-Danlos Syndrome (EDS) is classified as a rare disorder affecting 1:5000 people. Based upon recent research, the prevalence of EDS exceeds this number and …

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