Archive for the ‘Diagnosis’ Category

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
Hypermobile EDS Educational Session – April 21, 2016

Posted on April 2, 2016

Hypermobile Ehlers-Danlos Syndrome Educational Session at Cincinnati Children’s Hospital Medical Center Please join us for an hour long session hosted by Dr. Derek Neilson discussing the diagnosis and management of hypermobile Ehlers-Danlos Syndrome (EDS). Dr. Neilson will review the criteria used to diagnose hypermobile EDS, and discuss general recommendations that help patients with EDS.  He will […]

Read More

blog-post-thumbnail
8 Tips for Patients Newly Diagnosed with Ehlers-Danlos Syndrome

Posted on November 20, 2015

Once you are diagnosed with Ehlers-Danlos Syndrome, it can be an overwhelming process to find supportive medical care and learn ways to live life more efficiently and safely.  Get a head start by gleaning some valuable pointers  from the experiences of veteran EDSers like Ellen. The information in this article should not be considered as professional […]

Read More

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
Double-jointed? Often in Pain? It Could be Ehlers-Danlos Syndrome!

Posted on June 6, 2015

Ehlers-Danlos Syndrome (EDS) was once thought to be a rare disorder, but EDS experts say its prevalence is under-estimated and its diagnosis is often missed! Learn the signs.   By Abi Jackson _ If you suffer from these ailments, you could have EDS – a rare condition of the joints. Here’s what you need to know. If you don’t know […]

Read More

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
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 […]

Read More

Get Webinar Announcements And Our FREE Guide

Support EDS Awareness

See all upcoming events

Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,802 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 652 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,310

Loading ... Loading ...