Archive for the ‘Parenting’ Category

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Searching for groups providing aid to disabled, EDSers

Posted on July 24, 2013

Many people are trying to find support and guidance after being diagnosed with Ehlers-Danlos Syndrome.  The following post is a good example. Direct them to www.edsawareness.com  or   www.EDNF.org … we can help!  By Sarah Lindenfeld Hall “I received this email from a mom who was diagnosed with a serious disorder after the birth of her child. […]

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Ehlers-Danlos Syndrome Can Look Like Child Abuse

Posted on July 19, 2013

We have heard stories about parents taking their EDS children to the ER for a joint dislocation.  It is unacceptable that some are being accused of child abuse!    “Sadly, readers, I have heard a few other cases of physical disabilities, particularly rickets,being mistaken for child abuse and disabled children being taken into care. Now, here is […]

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London Marathon to Raise Money for Ehlers-Danlos

Posted on July 12, 2013

Guitarist, Raff Achour, is a runner and has taken part in the London Marathon to raise money for Ehlers-Danlos Support UK.  Ehlers-Danlos Syndrome affects both his seven-year-old son and his son’s mother. By: Annabel Langley “AUDIENCES will be climbing the Stairway To Heaven when a popular Led Zeppelin tribute band comes to Newbury next weekend. Boot […]

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EDSer Inspires Girl Scouts as a Volunteer Leader

Posted on June 29, 2013

This Volunteer is an inspiration to those Girl Scouts that she touches. By VICTOR FERNANDES, Erie Times-News, Erie, PA victor.fernandes@timesnews.com “Sharon Bond, of Millcreek Township, has Ehlers-Danlos syndrome and is wheelchair-bound. But that doesn’t slow her down. Bond works as a volunteer leader at Hawthorne Ridge Girl Scout Camp in Fairview Township. According to her […]

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Fatigue in Ehlers Danlos Syndrome

Posted on June 23, 2013

These parents of children with EDS are empowering them with the confidence and understanding to develop their own independence. “Does Ehlers Danlos Syndrome Make You Tired?” by Jenny; Cheetahs In My Shoes & Just Photos By Me | “I was going to call this post “Fatigue in Ehlers Danlos Syndrome” but that sounds a bit grown up […]

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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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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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