Archive for the ‘Social/Relational’ Category
Posted on June 9, 2015
A new, closed, Facebook group is available for support of friends who are caring for, supporting or living with people who have hypermobility/ EDS. _ _ If you meet these requirements you can join at www.facebook.com/groups/friends.of.hypermobiles. NOTE: no EDSers will be admitted to the group, it is for support people only so that […]
Posted on April 12, 2015
NPR radio ran a segment on invisible disabilities to commemorate the 25th anniversary of the Americans with Disabilities Act (ADA). While progress has been made, much still needs to be done. Click here for the original broadcast on NPR radio. Join the efforts to spread awareness of ADA on its July 26th anniversary. Resources include this Tool Kit, a project of the ADA […]
Posted on January 20, 2015
After being diagnosed with Ehlers-Danlos Syndrome, high-school student Gabrielle found comfort with members of the Young Life organization. She found purpose and motivation through her renewed spiritual connection. “Right after I got diagnosed with Ehlers-Danlos Syndrome (EDS) and figured out I could not play volleyball, I truly was devastated. I felt like I was missing out […]
Posted on May 18, 2014
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Posted on September 14, 2013
EDS Awareness was invited to participate in Radio talk show about EDS Pain Management. It aired on Monday night, 7/22/2013. (Click on the title above to listen to a replay of the interview.) You will also learn about the EDS Awareness Support Group program. Click here to listen to the radio show (after commercial). Enjoy the program. We appreciate your Likes […]
Posted on July 29, 2013
EDSer Noah Baerman shared his journey & his jazz music with the EDS community at 2013 EDNF Conference in Providence, RI (August 1-3). He says, “I am happy and proud to announce that I will be presenting this year at the Ehlers-Danlos National Foundation’s annual conference. This is a great honor for me and, perhaps more […]
Posted on June 21, 2013
Many EDSers use the “Spoon Theory” to explain their fatigue and limitations due to the acute-chronic pain cycle. BBC News presents a series on “insights into disabled life” which shares the “Spoon Theory” with the public audience. We hope this will increase awareness & understanding of the compromises we EDSers must make to manage Ehlers-Danlos […]
Posted on June 2, 2013
Natasha discusses Ehlers-Danlos Syndrome and the support we need to manage this disorder. Scroll down to read the “Five Considerations for Supporting People with EDS” (Published on the Huffington Post) by Natasha Lipman Hands up if you’ve heard of Ehlers-Danlos Syndrome? Chances are if you actually have EDS, you’d be a bit wary of thrusting your […]
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