Archive for the ‘Managing Ehlers-Danlos’ Category

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“No Matter What’s Going on With My Brain There’s Always Music in My Head.”

Posted on January 14, 2013

The Bellmawr resident writes edgy, melodic rock songs with titles like “Palinopsia,” the name for an optical disturbance that’s among the debilitating symptoms of Ehlers-Danlos Syndrome.About four years ago, Fatale was diagnosed with the connective-tissue disease, which creates havoc in the joints, spine, and elsewhere. After surgeries left her barely able to move her head, […]

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A Dog with Ehlers-Danlos Syndrome?

Posted on January 13, 2013

This is an incredible story of a Dog with Ehlers-danlos Syndrome? The dog was diagnosed with EDS by Dr. Marianne E. Bailey who is a veterinarian at South Arundel Veterinary Hospital in Edgewater, MD. “My veterinarian says he thinks my dog may have Ehler Danlos Syndrome. She has really stretchy skin and, when she gets […]

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Emily has EDS and a Creative Home Business

Posted on January 13, 2013

Those of us with Ehlers-Danlos Syndrome have a difficult time finding work.  Read about how Emily and her partner James’ Pet Care business evolved into “Comfy Bums for Eco Mums’”. “Having children is a life-changer for anyone – but for Emily Skerrett a rare joint disease meant two pregnancies left her disabled. Almost overnight she went from […]

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A Dog with Ehlers-Danlos Syndrome?

Posted on January 12, 2013

This is an incredible story of a Dog with Ehlers-danlos Syndrome? The dog was diagnosed with EDS by Dr. Marianne E. Bailey who is a veterinarian at South Arundel Veterinary Hospital in Edgewater, MD. “My veterinarian says he thinks my dog may have Ehler Danlos Syndrome. She has really stretchy skin and, when she gets a cut, it […]

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Welsh Government is Starting to Pay for EDS Treatment

Posted on January 7, 2013

It has been difficult in many countries, including the US, to get insurance and government agencies to pay for Ehlers-Danlos Syndrome treatment. Many doctors do not understand this disorder and most do not know how to treat this condition. This is a story of a successful result of a public appeal for a teenager with […]

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Oh, the holidays…

Posted on December 4, 2012

by Kassady Oberacker  –  The reflections of how this EDSer relates to the  holidays… and what we REALLY want from loved ones during the Holiday season. “It’s that time of year… The time I get to be beyond stressed because I don’t have the money to buy gifts for those that I love (even though that’s not what […]

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Laura’s “Can-Do” Spirit Persists with EDS

Posted on December 3, 2012

Laura Lyons has a positive attitude while managing her life with EDS. She has found many ways to contribute using the many creative talents she has. The following are excerpts from an article about Laura that appeared in the Springfield, IL newspaper. “Lyons received an associate’s degree from LLCC in May. Making the greeting cards keeps her busy […]

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Ontario Health Ministry Urged to Pay for Out-of-Country EDS Surgery

Posted on December 2, 2012

Ontario continues to have issues with uninformed doctors regarding Ehlers-Danlos Syndrome. Many EDSers, are coming to the US for medical care. This is an article about Steve Clark’s drive towards getting more support for those seeking medical care and more EDS education for doctors in Ontario.  The article was written by Susan Gamble and published in the Brantford […]

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