Sign Petition for EDS at WhiteHouse.gov

YOUR VOTE MATTERS!!!! 25,000 signatures are needed by the end of the year!   See instructions and links below. (Adding your vote takes 30 seconds…)

This petition was created by Alisa H. from Galloway, OH. (Unfortunately, we do not have her contact information.)

Our understanding of why she created the petition: To promote EDS awareness & education, and petition the government to recognize that EDS is an underdiagnosed disorder that can be disabling.

There has been some discussion in the EDS community about what it could mean to “recognize EDS as a disability” and whether this distinction could affect Social Security Disability (SSD).  Please note: SSD eligibility rules are very strict. A person becomes eligible for the designation of “disabled” after meeting stringent qualifications, either by having a listed disease that typically results in severe disability or death, or by having a combination of diseases and/or injuries that equals the severity of an item on that list.

Unfortunately, it may be difficult to justify adding Ehlers-Danlos to the SSD list of “automatic qualifiers”, since EDS symptoms are not always predictable and can range from mild to severe, depending on the individual. That said, we hope that this additional awareness brings it to the government’s attention that EDS is extremely disabling to many of us. Furthermore, it is important to sign this petition to promote EDS awareness to the public.   Thank You!

Please add your comments to this discussion by clicking the “Add comment” link below this article

 

*****   HOW TO SIGN THE ONLINE PETITION: 

  1. Follow this link to Ehlers-Danlos petition
  2. Click on the blue button “Create an account”
  3. Type your email, name and zip code (optional). (An email will be sent to your inbox, titled “Almost done! Verify your Petitions.WhiteHouse.gov account‏”)
  4. Open this email and click the link which takes you back to the WhiteHouse.gov website. On this webpage, click the “SIGN PETITION” button. That’s all!
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A second petition related to Chiari Malformation
Please also sign this separate petition to support those in our community who have Chiari Malformation. The petition is found here

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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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