Archive for the ‘Caregivers’ 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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Book Purchases Will Help EDSer Get Mobility Van

Posted on August 20, 2013

You can help EDSer Erika by purchasing the novel entitled “Pearl, MD”. Proceeds will help Erika and her family purchase a van to transport her in her wheelchair! “For the next 60 days, all author proceeds from the sale of Pearl, MD will be donated to the family of Erika Heitman, a 14-year-old girl from Carolina […]

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Former Gymnast Launches Awareness Petition for EDS

Posted on August 7, 2013

Julie is promoting a petition in the UK.    CLACTON AND FRINTON NEWS Reports: “Julie Robertshaw spent her early years as a gymnast with incredible potential, excelling in her talent. But after being struck with unexplained pains in her late teens, her extraordinary flexibility revealed itself be a curse, not a blessing. Now 44, she […]

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4-Year-Old EDSer is an Inspiration to Her Family

Posted on July 29, 2013

It is amazing how resilient young children can be despite their struggles with Ehlers-Danlos Syndrome. Kaylee Kretschmer looks like a typical 4-year-old budding ballerina, but she’s a true fighter. “She was born with Ehlers-Danlos-Syndrome, a little known rare genetic condition which means her limbs dislocate easily, she is prone to bruising and is constantly tired. Her […]

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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  or … 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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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 “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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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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Ehlers-Danlos Syndrome the Mystery Diagnosis

Posted on June 9, 2013

Marissa suffered from stomach aches and headaches but finally got diagnosed with Ehlers-Danlos Syndrome. After major surgery she finally got some relief from her pain. We appreciate your Likes and Comments    

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