Archive for the ‘Community’ Category
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 […]
Posted on December 15, 2017
December 13, 2017 By Ellen Lenox Smith, Columnist Ellen Smith is a member of the Rhode Island EDS Support Group and very active as an advocate and speaker. People living with Ehlers-Danlos Syndrome (EDS) are often afraid to go to a hospital emergency room, due to a lack of understanding in the ER staff on […]
Posted on November 4, 2017
EDS Awareness at Dayton 2017 Holistic Symposium at Miami Valley Hospital Centerville Ohio
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