Archive for the ‘Managing Symptoms’ Category

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What it’s Like to Live with a Serious Invisible Illness Like EDS

Posted on July 15, 2018

by:  ALICE HOWARTH From searching for a cure to being repeatedly dismissed, former model Tori Chalmers opens up about being part of the invisible illness community. Tori Chalmers  ES Lifestyle Newsletter Having any kind of illness is tough but add to that the fact of it being invisible, at times it can seem impossible to cope with. In the […]

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Doctor said it was all in her head, but it was ‘the most common condition’

Posted on June 24, 2018

POSTED 5:48 AM, JUNE 26, 2018, BY CNN WIRE, UPDATED AT 07:37AM, JUNE 26, 2018 Fox 59 File photo Super Bowl MVP Nick Foles is ecstatic about leading the Philadelphia Eagles to victory, but that’s not the triumph he celebrates daily. He gives that medal to his wife, Tori Foles, for what he calls her “amazing strength” […]

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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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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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Kristin Means Discusses Her Journey with EDS

Posted on May 4, 2017

Many Ehlers-Danlos Syndromes (EDS) experts believe that its prevelance is higher than once thought. Estimates range from 1 in 500 to 1 in 100.   Dr. Fraser C. Henderson, Sr., MD, comments in this video that “1 in 10 Americans have hypermobility connective tissue disorders. That’s 30 million people – and we don’t know exactly […]

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New Clinic for Ehlers-Danlos Syndrome in Ontario

Posted on February 27, 2017

The Canadian Press Published Monday, February 27, 2017 The Ontario government said Monday that it was improving access to specialized care for people living with rare diseases. Health Minister Eric Hoskins announced the opening of a new clinic for people with Ehlers-Danlos Syndrome and the expansion of clinics for those with inherited metabolic disorders and […]

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Telling My Teammates “I Have Ehlers-Danlos Syndrome”

Posted on February 25, 2017

By KYLE GRABOWSKI @kylegrbwsk NORTHAMPTON — Hannalise Rivera-Lovett jumped to intercept a pass. She was playing in a summer league basketball game at JFK Middle School between her sophomore and junior seasons to stay fresh for the winter. Everything above her knee went one way, everything below went the other. The torque caused a subluxation […]

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“Grey’s Anatomy” Ehlers-Danlos Episode

Posted on October 24, 2016

BY Kaytlyn Leslie of the Tribune News. Watch this video about the EDS patient who inspired the Ehlers-Danlos portrayal in the Oct. 13 episode of the TV show “Grey’s Anatomy”. Olivia Herzoff, 19, has Ehlers-Danlos syndrome, a rare connective tissue disorder that gives her constant pain and a range of related medical issues. An Oct. […]

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