Archive for the ‘Workplace’ Category

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People With Invisible Disabilities, including Ehlers-Danlos, Need More Understanding

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 […]

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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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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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Hypermobility “Stick Men”

Posted on April 13, 2013

Enjoy the creativity of this EDSer who gets her message across with “stick people” stories, communication cards and signs.     At times we need a little humor!  Hannah from the U.K. has found an effective way to explain EDS symptoms & needs to the public in a casual and light-hearted tone.     Click […]

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When EDS Strikes Families

Posted on April 5, 2013

By Sandra Strege-Mims Barr,  PhD. Sandra Leads the Ehlers-Danlos Syndrome Local Support Group in Dallas, TX. We will be looking today at the impact that a diagnosis of Ehlers-Danlos Syndrome has on a couple or a family. Most families proceed through day after day earning money from one or two incomes, using that money to […]

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Explaining Disability​ – Part of What Makes Us Disabled

Posted on January 23, 2013

Author: Jonathan  Rodis President-Massachusetts  Chapter of the National Marfan Foundation Head-EDS Massachusetts  and New England Support Group       “I wanted to share with you something I wrote to  help everyone understand what it is like to be disabled, what it is like to  have an invisible disability, what to do if you find […]

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This Young Woman Dislocates Her Shoulder Up to 10 Times a Day By Just Sneezing!

Posted on January 1, 2013

Lauren has not been diagnosed with EDS yet. But she has many of the symtoms.  Trying to work with this disorder can be difficult. “- This Genetic condition means  Lauren’s collagen is too weak to support her joints – She goes to work  at McDonalds even when she is in pain – Doctors dislocated Lauren’s […]

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The “Handshake” Mouse for EDSers

Posted on June 1, 2012

An ordinary horizontal mouse requires your forearm to twist away from its natural position. This can create more problems for unstable joints like mine. EDSers do better with a grip that is the same as an ordinary mouse, just turned sideways into a handshake position. I got used to the Handshake Mouse very quickly. This Vertical Mouse […]

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