Archive for the ‘Community’ Category
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 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 […]
Posted on December 5, 2013
Our presenter for December 4th was Dr. Carl Mentesana, DDS. His topic was: “EDS: A Dental Perspective“ Click Here for the recording Note: the presentation slides start after about 7 minutes into the program Addendum to the Patient Q & A Question: Please post the […]
Posted on December 3, 2013
Bethany wants to celebrate Christmas by raising funds for toys at a local hospital. A LITTLE girl with a rare illness is defying her condition and taking on her own Christmas fundraising mission to help other poorly children. Bethany Hambleton, nine, suffers from Ehlers Danlos Type III – a disorder which means she has to […]
Posted on December 1, 2013
Katie Vale has finally discovered some methods to help her manage her Ehlers-Danlos Syndrome symptoms. By: Lucy Benyon Published: Sun, December 15, 2013 “Katie Vale was diagnosed with Ehlers- Danlos disease which causes regular injuries [PH] Katie, 34, lives in Essex in the UK. Eleven years ago she was diagnosed with Ehlers-Danlos syndrome, a condition that causes her […]
Posted on November 29, 2013
“Good Morning America” reported about Ehlers-Danlos on Friday, 11/29/2013. We are providing a link to Watch the VIDEO of the TV segment. EDS awareness is one positive outcome of the tragic story about the Huber family’s false allegations of child abuse. Their daughter has been diagnosed with Ehlers-Danlos Syndrome. Click here for this story about the Huber family’s false allegations […]
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