Archive for the ‘Dealing with Doctors’ Category

Ehlers-Danlos – “An Accident Waiting To Happen”

Posted on June 18, 2015

Philip Howard was the 88th person in Britain to be diagnosed with Ehlers-Danlos syndrome (EDS). He has written a book about his fight to overcome adversity. Philip Howard’s new book “An Accident Waiting To Happen” tells of living with a rare condition that leaves him prone to falling over and breaking bones. Ben Blosse reports. […]

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Dr. Brad Tinkle Appointed Medical Advisor for the Hypermobility Syndromes Association

Posted on February 3, 2014

Read this is an exciting announcement from the Hypermobility Syndromes Association!  We congratulate Dr. Tinkle and thank him for his exemplary & ongoing service to the EDS community! The HMSA is very pleased to announce that Dr Brad Tinkle has agreed to join the Hypermobility Syndromes Association as a Medical Advisor! Many of you will remember […]

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Finally Diagnosed with Ehlers-Danlos Syndrome and Chiari

Posted on October 30, 2013

 It took Karen Dixon 5 years to finally get diagnosed with EDS and Chiari. She originally discovered her symptoms while watching a show called “Mystery Diagnosis”. “While I was watching the show, I could not help but realize the similarities I had with the patient on the show”! By KAREN DIXON Editor’s note: Today, we are highlighting […]

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Attention Doctors: An EDS Patient’s Bill of Rights

Posted on June 6, 2013

Many EDS patients are struggling to get their doctors to understand their condition.  This “Bill of Rights” is a tool that may help EDSers communicate with doctors. By     an_angel_with_wings “The purpose of this Bill of Rights is not to be combative or argumentative. I have experienced all of these things during the time that my […]

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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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Being Your Own Advocate

Posted on February 22, 2013

Author: Jonathan  Rodis President-Massachusetts  Chapter of the National Marfan Foundation Head-EDS Massachusetts  and New England Support Group “ many times have you or loved one or a friend been told something totally wrong about your condition from a doctor?  Of course, I know the answer…many, many, many times. The worst imaginable place to hear it […]

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If Your Child Moans About Sore Legs Dont Assume They’re Just Lazy

Posted on December 30, 2012

Merrily had problems with her joints.  She was eventually diagnosed with Hypermobility, a form of Ehlers-Danlos Syndrome. When Merrily, my ten-year-old daughter, complained this summer that the sole of her left foot was sore, I was surprised to find a large lump in the arch. Our GP put it down to ill-fitting shoes (she lived […]

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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
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