Magan – Somalia

Posted on September 21, 2017

Thank you so much for the effort, dedication and sacrifice that you and your daughter have made for so many people around the world including those living in the forgotten parts of the world like us.

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Katharine from Pittsburgh

Posted on July 20, 2017

Thank you so very much for providing me with all of these resources…I should have reached out for help such a long time ago. I look forward to looking at all of them and attending meetings in the future.

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Joanne in Ontario

Posted on July 7, 2017

Thank you for sharing your wife’s story on EDS….  an amazing soul to live through so much pain and have everyone undermine her due to their ignorance …  I could relate to her story…  I was diagnosed with Fibromyalgia in 2008 and just found out it is actually EDS.

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Tammy in Wisconsin

Posted on July 4, 2017

First of all I would like to say thank you very much for your unwavering support of EDS Wisconsin. I am so thankful that the EDS community has you and I deeply appreciate the time and effort that you have put into awareness and education for EDS.

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J. Rene in Utah

Posted on June 16, 2017

Thank you for dedicating your time to providing us all with these great video conferences on EDS & related conditions. Thank you for providing us with a web site that allows us to share our groups with the community.

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Doris from Austria

Posted on June 14, 2017

I thank you very much for your efforts regarding making this information for EDS able to be seen worldwide.   I am from Austria and I have no doctor who is able to help me. EDS is not known in Austria.  

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Posted on March 31, 2017

Thank you John, your daughter Deanna and your darling wife who ultimately lost her life. You are the real heroes for sharing this information and getting it out there. We appreciate you and your daughter for being such fantastic advocates of this horrible illness.

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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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