Archive for the ‘Dealing with Doctors’ Category
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. […]
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 […]
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 […]
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 […]
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 February 22, 2013
Author: Jonathan Rodis President-Massachusetts Chapter of the National Marfan Foundation Head-EDS Massachusetts and New England Support Group “Wow..how 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 […]
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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