Archive for the ‘Diagnosis’ Category

New EDS Research Center: Baltimore Location Announced

Posted on May 14, 2013

The Center for Clinical Care and Research is officially underway. The EDNF will partner to create a virtual center at the Greater Baltimore Medical Center (GBMC) under the direction of Dr. Clair Francomano. The partnership agreement was signed on May 8, 2013. McLean, VA (PRWEB) May 14, 2013 Ehlers-Danlos National Foundation (EDNF) will provide funding […]

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EDSers Need to Speak Up to Doctors

Posted on May 8, 2013

Many Patients with EDS are struggling with finding medical practitioners who will take the time to understand their condition.  This article urges you to be assertive and be an advocate for yourself. USA Weekend article: Illustrations – Luis Alvarez/Getty Images Written by Cheryl Alkon “About 100,000 people die each year due to medical errors, largely from misdiagnoses, […]

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Basics of Ehlers-Danlos Syndrome

Posted on April 28, 2013

This is a basic, no frills explanation of Ehlers-Danlos Syndrome. Follow one woman’s journey to diagnosis and be encouraged by the positive way she handles changes in her life. We appreciate your Likes and Comments

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I learned something new today about EDS

Posted on March 20, 2013

  This EDSer is taking advantage of the Facebook EDS awareness group.    “These past days I’ve learned some new stuff about myself and my diagnose I had no idea about before. The hardest parts about my diagnose is learning what’s EDS and what’s normal. And EDS, is so much more than hypermobile joints. And I’m […]

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Final EDS diagnosis after 17 years

Posted on March 15, 2013

It took me 17 years to find out what I was suffering from. There are still not enough doctors that know about Ehlers–Danlos syndrome and how to diagnose it. Too many patients are lost for too long without knowing, it’s a long and painful path. Written by Genevieve, My childhood was relatively normal, I was […]

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Performers helping to Raise Funds for EDSer

Posted on March 5, 2013

By Kathryn Bradley Friends rally to help Carlton Colville woman with debilitating condition Young performers will take to the stage next weekend to raise funds for a talented musician whose promising career was ended by a debilitating genetic condition. Heather Willis, from Carlton Colville, was a keen performer, singer, harpist and flautist before being diagnosed […]

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Ehlers-Danlos Syndrome Diagnosis

Posted on March 4, 2013

This young lady finally got her diagnosis. It typically takes many years to get a proper diagnosis. Written and published by TaniaLT, “Last year, while researching information for the forthcoming Rare Disease Day for work, I came across a case study on the Rare Disease UK site about a young woman who had struggled with […]

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The Various Forms of Ehlers-Danlos Syndrome

Posted on February 16, 2013

  This article is a very good summary of the various forms of Ehlers-Danlos Syndrome and some recommendations for treatment.   “This article is devoted to a rare genetic and degenerative disease unknown by the public. This illness is incurable, but there is hope today: Gene therapy. If I raise this subject is on the […]

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