Archive for the ‘Managing Ehlers-Danlos’ Category

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Being Your Own Advocate

Posted on February 22, 2013

Author: Jonathan  Rodis President-Massachusetts  Chapter of the National Marfan Foundation Head-EDS Massachusetts  and New England Support Group “Wow..how many times have you or loved one or a friend been told something totally wrong about your condition from a doctor?  Of course, I know the answer…many, many, many times. The worst imaginable place to hear it […]

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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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Explaining Disability​-Part of What Makes Us Disabled

Posted on January 17, 2013

Author: Jonathan  RodisPresident-Massachusetts  Chapter of the National Marfan FoundationHead-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 yourself trying to explain  your […]

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