Archive for the ‘Community’ Category
Posted on April 1, 2018
By Chris Baraniuk Some people are resistant to local anaesthetic, meaning they must endure dental and medical procedures without such pain relief. And we’re only beginning to understand why. To Lori Lemon, the doctors all seemed flabbergasted. She had come in to the Mayo Clinic in Jacksonville, Florida, to have a lipoma – a growth […]
Posted on March 30, 2018
Click here to check out our new New Instagram site EDS Awareness_Official
Posted on March 20, 2018
Tiffany wakes up exhausted with her Ehlers-Danlos Syndrome issues. Life with Ehlers Danlos: Surviving Exhaustion While Still “Adulting” By Tiffany Early I’m tired. That’s not exactly a news flash. I’m forever and always tired. One thing that I have in common with the majority of the chronic illness and rare disease community is my chronic […]
Posted on February 24, 2018
By Natalie Angley, CNN Mandy Harvey takes people on a journey when she sings. “The thing I love about music … you can close your eyes and be transported back to a memory or a dream or a feeling,” the 30-year-old said. Harvey has near-perfect pitch, so it’s hard to believe she is deaf. “I was […]
Posted on February 21, 2018
No More Monkey Bars: A 13-Year-Old’s Journey With A Rare Genetic Condition by Isabella ‘Kitty’ Yim An email from Louis DeLauro, a middle school teacher at the Grey Nun Academy in Yardley, Pennsylvania. He wrote: “Isabella Yim is 13 years old and is a star in my Language Arts Classroom. All of us found her […]
Posted on February 13, 2018
EXCITING ANNOUNCEMENT! An anonymous donor has presented us with a $1 million gift to jumpstart groundbreaking genomic research into genetic cause of hypermobile Ehlers-Danlos syndrome (hEDS), a rare, degenerative, and all-too-often disabling connective tissue disorder. This is the single largest gift in the 33-year history of the Ehlers-Danlos Society, and the largest individual gift in […]
Posted on February 1, 2018
Ehlers-Danlos Syndrome & Hypermobility Spectrum Patient Symposium Click here for the recording link Note: this is a 6 hour program that you may want to listen to in segments NOTE: Times for each segment are listed below. These are not listed on the video page. The Symposium schedule is as follows: TOPICS INCLUDE: • Welcome […]
Posted on January 7, 2018
Nathalie says because her illnesses are “invisible” people often doubt whether she really is disabled! Ehlers-Danlos Syndrome is a major disability for so many. A disabled woman says she was refused help boarding a flight because she “doesn’t look ill”. Nathalie Allport-Grantham, claims a member of staff at Stansted Airport told her she was “wasting […]
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