Author Archive
Posted on February 2, 2014
This BC Variety Club is a Children’s Charity Helping those in need specifically Trissanna who has Ehlers Danlos Syndrome. by Carol Aun – Mission City Record “From the minute she wakes up Trissanna Hunter feels the pain in her joints, the cracks in her bones. If she was older, like her grandmother, she would simply she […]
Posted on January 30, 2014
Chloe is following her dreams by giving a public performance debuting their first album Songbird. By Rene Gerryts A CHRONICALLY ill mum is to defy the odds by performing her debut album live. Chloe Evans-Lippett suffers from hypermobility syndrome that’s left her wheelchair dependent, in constant pain with hips that dislocate up to 11 times a […]
Posted on January 5, 2014
Ilana Jacqueline Freelance writer, patient advocate This is a challenge for all of us with a Chronic illness. Ilana gives some great suggestions on how to handle this situation. “I don’t generally go into the long and sordid story of how me and the majority of my family get on with my chronic illness. But what […]
Posted on December 19, 2013
Topic: “Pain Management and Ehlers-Danlos Syndrome” Presenter: Dr. Kenneth Goldschneider from Cincinnati Children’s Hospital. Click here to access the recording ______________________________________________ About Dr. Kenneth Goldschneider Director of the Pain Management Center at Cincinnati Children’s Hospital MD: University of Connecticut Health Center School of Medicine, Farmington, CT, 1991. Residency: Pediatrics, Duke University Medical Center, Durham, NC, 1991 […]
Posted on December 10, 2013
Ehlers-Danlos Syndrome was discussed on the daytime talk show, Katie. We are providing links to watch the show, and encourage EDSers to add comments to the show’s website. Watch the entire TV episode Click Here. Visit the interactive ABC TV station website, where you can chime in with your comments: Here are 2 video clips from the Katie […]
Posted on December 9, 2013
Listen to a debate about ethical and legal issues of direct-to-consumer genetic testing. Link is provided below. The debate was spurred on November 22, when the FDA ordered the 23andMe company to stop marketing its product– $99 genetic test offered direct-to-consumers. The FDA warning letter indicated that the company hadn’t secured marketing authorization and expressed concern that inaccurate results could […]
Posted on December 8, 2013
Check out these product reviews from our EDS support group! **ALL proceeds go to help local EDS support groups and EDSawareness.com programs when you order from www.bodysupportstore.com Click here to view ALL PRODUCTS offered in the online store. _____________________________________________________________________ EDSers’ PRODUCT REVIEWS: Our Ehlers-Danlos support group discussed products that have made a big difference in reducing pain. Here are EDSers’ […]
Posted on December 7, 2013
Emily has learned to deal with the challenges of raising 2 children despite her Ehlers-Danlos Syndrome. By EMMA INNES “A mother has been left devastated by a rare condition that leaves her barely able to cuddle her children. Emily Comber, 31, suffers from a rare syndrome that causes her constant pain and makes her joints ‘pop […]
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