Archive for the ‘Caregivers’ Category
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 […]
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 […]
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 […]
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 […]
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. […]
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 […]
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 […]
Posted on June 9, 2013
Marissa suffered from stomach aches and headaches but finally got diagnosed with Ehlers-Danlos Syndrome. https://www.youtube.com/watch?v=NBfz8nX5rug After major surgery she finally got some relief from her pain. We appreciate your Likes and Comments
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