Archive for the ‘Awareness’ Category

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Elisha Doesn’t Regret Decision to Amputate for Ehlers Danlos Pain Relief: Watch VIDEO STORY

Posted on December 30, 2014

Watch this video! Elisha Morgan is recovering from a controversial foot amputation — with no regrets. Whether you agree with her decision or not, there is no doubt of the bravery she’s displayed in this situation — we salute her strong spirit!

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Foot Amputation Offers Relief and Hope for Ehlers Danlos Syndrome Sufferer

Posted on December 28, 2014

After a controversial surgery, Elisha Morgan feels she made the right decision to amputate her foot. She is hopeful. Her surgeon and her family have been supportive. (Part 2 of 3)

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Chronic Pain from Ehlers-Danlos Syndrome Leads to a Drastic Decision

Posted on December 26, 2014

Elisha Morgan’s 8-year struggle with severe foot pain lead to an Ehlers-Danlos diagnosis that changed her life. Her doctors exhausted all treatment options. Now, she considers making a very difficult decision … (Part 1 of 3)

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Actress Gemma Christie is Back After Struggles with Ehlers Danlos

Posted on December 24, 2014

Gemma Christie is a popular UK singer/actress with 4 disorders, including Ehlers Danlos Syndrome. She is returning to the stage with the goal of bringing public awareness to invisible illnesses, such as EDS. This live performance called “Gemma Climbs Her Mountain” is about hope and rising above the illness. The play focuses on Myalgic Encephalopathy (ME), a disorder that is similar to Chronic Fatigue Syndrome.   […]

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Educational Advocacy and Accommodations for Ehlers Danlos Students

Posted on December 23, 2014

Students with medical conditions, such as Ehlers-Danlos Syndrome (EDS), should have equal educational opportunities in all countries. Unfortunately, that isn’t the reality – according to Amy King, an EDS student and advocate for adult education in the UK. Many adults living with Ehlers Danlos Syndrome (EDS) are highly intelligent, motivated and hard-working individuals looking for the opportunity to learn and contribute to their […]

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8 Year Old Forest Ranger with Ehlers Danlos Syndrome on TV

Posted on December 15, 2014

Watch this video about a boy with Ehlers Danlos Syndrome whose dream came true! “Eight-year-old Gabriel was officially named an honorary ranger at Yosemite National Park. Gabriel Lavan-Ying, from Gainesville, Florida, has Ehlers-Danlos syndrome, a debilitating and incurable disorder affecting that causes overly flexible joints and effects the skin and blood vessels. But when the Make-A-Wish Foundation […]

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Nicola Gets Help From Fiance for Her Hypermobility Syndrome

Posted on December 13, 2014

Nicola’s story brings awareness to how difficult life can be with hypermobile joints.  She is fortunate to have a the help of a supportive fiance and a mother who is a retired nurse. By PETER HENN. Nicola Lynch, of Rainham, Kent, has dislocated her shoulders 80 times and her thumbs 25 times each in the six years since […]

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UK Woman Spreads Awareness of Ehlers-Danlos Syndrome

Posted on December 6, 2014

Ruth Baker is telling her story to increase EDS Awareness in the UK.  She shares our passion – helping even one person makes it all worthwhile. Ruth says, “It can be a lonely place when you’re suffering from something that is so rare that even doctors don’t know what you’re talking about.” Doctors need to understand that EDS is perceived as a rare disorder only because […]

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