New Ehlers-Danlos Syndrome Survey

Hello! My name is Katie Bealka, and I am a graduate student in the Brandeis University Genetic Counseling Master’s degree program. I am looking to better what life is like for emerging adults living with Ehlers Danlos Syndrome (EDS), either the classical or hypermobile type, and need your help.

Have you been diagnosed with either the classical or hypermobile type of Ehlers Danlos syndrome?

Are you currently between the ages of 20 and 30 years old?

If so, we invite you to participate in our anonymous, online survey. The survey will ask questions about your experiences living with Ehlers Danlos syndrome as a young adult and should take approximately 10-15 minutes of your time. Your responses will be kept anonymous, and as a token of appreciation for participating, you’ll have the option to enter a raffle to win one of three $25 gift cards to Amazon.com. We hope that the results of this survey will help educate medical professionals about the unique needs of young individuals with EDS.

This study has been approved by the Brandeis University Institutional Review Board.

CLICK HERE:
https://brandeis.qualtrics.com/jfe/form/SV_b26nLrxrGfmHVTT  for more information or to participate in the survey

If you have any questions about this research project please contact Katie Bealka at kbealka@brandeis.edu. If you have questions about your rights as a research participant please contact the Brandeis Institutional Review Board at 781- 736-8133 or irb@brandeis.edu.

We’d also love if you share this study with any family members and/or friends that you think might qualify, as we’d love to get a large response.

Recommended by EDS Awareness and Chronic Pain Partners.

Click here for 2016 International EDS survey results.

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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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