Articles

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The Truth is that I will Always be Tired. It’s Part of my EDS.

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 […]

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Mandy Harvey Discusses her Struggles with Ehlers-Danlos Syndromes

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 […]

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Being different doesn’t mean that you’re alone with EDS

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 […]

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Many With Ehlers-Danlos have Reactions to Fragrances

Posted on February 15, 2018

The following is an article published by The Invisible Disabilities Association https://invisibledisabilities.org/    Why Go Fragrance Free? Millions Report Adverse Reactions to Perfumes and Fragrances. Most of us are aware of potentially harmful substances in the environment such as pollution, exhaust fumes and cigarette smoke. We even know that inhaling or using some cleaning products, paint, […]

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Ehlers-Danlos Society Receives $1 Million Gift for Hypermobile Ehlers-Danlos syndrome (hEDS) Research

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 […]

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David R. Cox Scholarship for Rare Compassion

Posted on February 8, 2018

With 1 out of 10 people affected by rare disease, still, medical professionals often do not recognize or encounter one of the 7,000 that exist today. In an effort to build the bridge of understanding and compassion among medical professionals, Global Genes presents the third year of the David R. Cox Scholarship for Rare Compassion. […]

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Freezing Vagus Nerve for Weight Loss can be Dangerous!

Posted on February 3, 2018

By: Mary Chris Jaklevic is a reporter-editor at HealthNewsReview.org. She tweets as @mcjaklevic. Tiffany Mielcarek was aghast when she saw NBC’s Today Show hype an experimental weight loss procedure that freezes a branch of the vagus nerve that sends hunger signals to the brain and regulates digestion. “They were talking about it as if this were a miracle. […]

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