Archive for the ‘Diagnosis’ Category

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Free Webinar: “Introduction to Ehlers-Danlos Syndrome” by Dr. Brad Tinkle – Recording Available

Posted on May 19, 2015

Watch this FREE video presentation! Dr. Brad Tinkle presents “Introduction to Ehlers-Danlos Syndrome”.   Sponsored by www.bodysupportstore.com     _  Click here for the recording of this presentation _  Click here for the slides used in this presentation _ To browse MORE VIDEO presentations by other EDS Experts – Click Here  (then select “previous page” to view more recordings.) _ About our […]

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A Diagnostic Test for Marfan Syndrome and Other Connective Tissue Disorders

Posted on October 28, 2014

In this VIDEO, Dr. Jeff Milunsky describes how a new DNA chip test, CONNECT1, detects multiple mutations that are diagnostic for connective tissue disorders such as Marfan, Ehlers-Danlos, and Loeys-Dietz syndromes. Dr. Jeff Milunsky is the Co-director of the Center for Human Genetics, Inc.   This presentation was given in August 2014 to the Massachusetts Chapter […]

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Doctors’ Ignorance Stands In The Way Of Care For Those with Ehlers-Danlos Syndrome

Posted on May 19, 2014

This story applies to all people with disabilities, and addresses a situation encountered by many patients with Ehlers-Danlos Syndrome. Story by LEANA WEN Picture Katherine Streeter for NPR “Something curious was happening in the emergency room. Eight patients had come in within minutes of each other. Almost instantly, the junior resident, two interns and a medical student […]

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Emily is Learning About Ehlers-Danlos Syndrome

Posted on March 25, 2014

Emily is going through the diagnosis for Ehlers-Danlos Syndrome and has support from family, teachers and friends.   Photo by Brian Shypula, Brant News Emily Landry, second from left in front row, sits with some of her classmates at St. Patrick School during a Dress Blue Day in support of the Arthritis Society.     […]

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Is a Fractured Bone Child Abuse or Ehlers-Danlos Syndrome?

Posted on February 12, 2014

There has been much discussion lately about parents being accused of child abuse when taking their children to the ER with a dislocated joint or fractured bones. By Vincent Iannelli, M.D. “Bone broke, me fix.” “That’s the running joke in medical school about orthopedic surgeons. Of course, there is a lot more to treating broken bones […]

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Chronically in Pain and in Love – POTS and Ehlers-Danlos Syndrome

Posted on February 10, 2014

The diagnosis was bittersweet. It was good to finally have an answer …. Ehlers-Danlos Syndrome! By Emily McComas CHARLESTON, W.Va. — Kyli Wolfson was losing hope. “For most of her life, she had struggled with a lack of energy. She couldn’t keep up with her peers in middle school gym class and tried to work with […]

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CrowdMed.com Website Helps Solve “Medical Mysteries”

Posted on February 7, 2014

CrowdMed.com helps patients collaborate with others as they explore rare medical conditions, such as Ehlers-Danlos Syndrome. Many have received suggestions that they can research and take to their doctor. Always consult your doctor first. BY: Kate Merrill NEWBURYPORT (CBS) – “Only a few years ago dancing, art, and music came easy to Diana Cleaveland. Now the 51-year-old […]

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Ehlers-Danlos Syndrome? More Claims of “Child Abuse” Emerge

Posted on January 10, 2014

If you have been following the story about the Huber’s being arrested for child abuse you can relate to this new story in North Texas of undiagnosed bone fractures resulting in a criminal or child custody case. by JANET ST. JAMES DALLAS — “Cell phone video is the only way Darlyn Harrell and Adam Bonham can […]

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