Archive for the ‘Caregivers’ Category
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
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 […]
Posted on June 5, 2013
by Yvette Thomas If you have Gastrointestinal problems that frequently accompany EDS, here are some helpful suggestions from an EDS Support Group member. (Always consult your doctor first.) 1. Small meals always. Try not to go a long time in between eating. Always carry a little snack with you. Something protein-based like string cheese or nuts. […]
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