Archive for the ‘EDS Diagnosis’ Category

Posted on June 16, 2013
It was a relief when Jess Covey finally got a diagnosis of Ehlers Danlos Syndrome. KINGSTON – By Michael Lea, Kingston Whig-Standard “It was about seven years ago that Jess Covey started to notice that something was wrong. The 26-year-old woman, originally from Athens, had moved to Kingston to attend the early childhood education program at St. […]

Posted on June 9, 2013
Laura, A 20-year-old from Chicago, describes her issues with EDS. “Hey everyone! I’m a 20 year old college student who got diagnosed with EDS when I was 16. I’ve always had incredibly large, permanent bruises on my shins which tear open and bleed beyond easily. I’ve made many trips to the ER where doctors hopelessly stared […]

Posted on May 16, 2013
Ireland is lacking specialists who know how to diagnose and treat EDS. This story follows an Irish woman who wished to receive medical care in nearby England, but was denied coverage. Wednesday, 15 May 2013 By Yvonne Evans for the Cork Independent Paper Last year, the Cork Independent featured the story of Kinsale native […]

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, […]
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
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 […]

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 […]

Posted on January 14, 2013
A DAD from Sheffield lived with a rare disease for four decades – until he was diagnosed by a doctor who spotted him tying his shoelaces with his wrists bent at an unusual angle. Ian Redfern’s six-year-old daughter Evie also has Classical Ehlers Danlos Syndrome, which causes her to bruise and damage her skin easily. […]