Archive for the ‘Caregivers’ Category

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
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. […]

Read More

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
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 […]

Read More

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.  https://www.youtube.com/watch?v=NBfz8nX5rug After major surgery she finally got some relief from her pain. We appreciate your Likes and Comments    

Read More

blog-post-thumbnail
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 […]

Read More

12 Ways to Help a Nauseous or Unhappy EDS Stomach

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. […]

Read More

Get Webinar Announcements And Our FREE Guide

Support EDS Awareness

See all upcoming events

Current Poll

How long until you received a proper diagnosis for EDS?

View Results

Loading ... Loading ...