Archive for the ‘EDS Diagnosis’ Category

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New Zealand EDS Patients told “It’s all in Your Head”

Posted on August 12, 2016

BY: THOMAS HEATON AND DAVID MAIDA             . . . . The syndrome causes abnormal collagen synthesis, which means that although the body produces it, the collagen is weaker and causes the joints and its connective tissue to become loose. Auckland-based Dr Fraser Burling, an expert in chronic soft tissue injuries, said […]

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My Wife Had EDS and Did Not Know IT! – 8th Year Anniversary

Posted on April 21, 2016

  This website and its free programs are dedicated to the memory of Carol and thousands like her – who suffer from undiagnosed Ehlers-Danlos…  We were married for 41 years.  You’d think that after all of that time you would know everything there was to know about a person. –          I knew Carol was a […]

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Ehlers-Danlos Syndrome May Increase Susceptibility to Infections

Posted on June 25, 2015

People with Ehlers-Danlos Syndrome (EDSers) may have higher risk for infections. Fragile skin and poor healing may lead to skin infections.  EDSers often have a lowered immune system, possibly due to chronic stress on multiple body systems or an IgG-3 deficiency.  By JORAWSTRON People with EDS seem to get more infections than people without EDS, and these infections often […]

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Woman with Ehlers-Danlos Syndrome (EDS) Has Painful Dislocations 10 Times a Day

Posted on January 10, 2015

When Jojo was diagnosed with EDS, she felt relieved! “Finally, I had an answer to why my body is the way it is.” Her EDS went undiagnosed for 24 years! This is not surprising, as our poll indicates more than 50% of EDS patients wait more than 20 years for a proper diagnosis.

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Cleveland Clinic webinar on “POTs, Syncope and Other Autonomic Disorders” held November 12, 2014

Posted on October 10, 2014

Cleveland Clinic webinar Date: Wednesday, November 12, 2014 Time: 12:00 PM (EST) (See link at the bottom of this article to register) Autonomic disorders are neurological diseases which can affect the cardiovascular system. Syncope, Dysautonomia and POTs (Postural Tachycardia Syndrome) are the most common forms. Over one million Americans are impacted with a primary autonomic […]

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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)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 653 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,312

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