Archive for the ‘Pacing Techniques’ Category

Watch this Video on Pain Management for Ehlers-Danlos Syndrome (EDS)

Posted on August 24, 2013

Watch this MUST-SEE video presentation from the Cincinnati Children’s Hospital discussing chronic pain management for Ehlers-Danlos Syndrome. This recent “online Q & A” event was held Tuesday, 8/20/13. Their primary focus is pediatrics, but the information will be helpful to all patients. Click here to start the video program About This Session Cincinnati Children’s Hospital Medical Center […]

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Noah Baerman Presents at the 2013 EDNF Conference

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 […]

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Transportation Can Present Obstacles for the Disabled

Posted on July 22, 2013

Transportation is difficult for the disabled in all countries.  Disabled people should be given more of a right to the roads than they are. Written by ADAM LUKE Cambridge News.co.uk Picture by Warren Gunn “Daredevil Ian Broughall made national headlines last week after police stopped him as he drove his 9mph disability vehicle along the busy […]

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Ehlers-Danlos & the “Spoon Theory” get attention on BBC News

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 […]

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Attention Doctors: An EDS Patient’s Bill of Rights

Posted on June 6, 2013

Many EDS patients are struggling to get their doctors to understand their condition.  This “Bill of Rights” is a tool that may help EDSers communicate with doctors. By     an_angel_with_wings “The purpose of this Bill of Rights is not to be combative or argumentative. I have experienced all of these things during the time that my […]

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12 Ways to Help a Nauseous or Unhappy EDS Stomach

Posted on June 5, 2013

by Yvette Thomas If you have Gastrointestinal problems that frequently accompany EDS, here are some helpful suggestions from an EDS Support Group member. (Always consult your doctor first.) 1. Small meals always. Try not to go a long time in between eating. Always carry a little snack with you. Something protein-based like string cheese or nuts. […]

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Proper Brace or Splint Usage Can Protect Joints

Posted on June 2, 2013

Blogger “purlbeadsjo“ presents an interesting discussion, with illustrations of various braces and splints she uses for her body support. “I am one of those EDSers who has a brace for almost every body part! (I’m missing a few) The 1st question that most bendie’s will have is how on earth did I get them all off […]

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Five Considerations for Supporting People with EDS

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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