Make a difference 

Help shape the future of EDS awareness

At Connective Issues, we believe that real change starts by listening and learning. We're collecting data and personal stories from people living with Ehlers-Danlos Syndromes (EDS) and related conditions to better understand the full scope of the diagnostic journey, symptom complexity, and what gets missed along the way.

This survey is a key part of the research for my upcoming book and advocacy work. Your responses will help highlight patterns, identify gaps in care, and elevate patient voices in both scientific and public conversations.

Who should take this survey:

  • Anyone with a formal EDS or HSD diagnosis

  • Those who suspect they may have EDS but haven't been diagnosed

  • People who have experienced medical dismissal or diagnostic delays

  • Family members or caregivers with relevant insights

How your input helps:

  • Informs the book Connective Issues with real-world data

  • Highlights common misdiagnosis patterns and overlooked symptoms

  • Strengthens advocacy materials for patients and providers

  • May be used (de-identified) to support future peer-reviewed research and grant proposals

Takes about 10–15 minutes. All responses are confidential and anonymous unless you choose to share your contact info.

If you’ve ever felt unheard or misunderstood in the medical system, this is your chance to change that for yourself and others.

Thank you for sharing your experience. It matters more than you know.

Abstract illustration of health data analysis with charts, graphs, and a magnifying glass on a tablet.
Illustration of health and fitness data, including a heart with a heartbeat line, a clipboard with line graphs and a magnifying glass, a scale, an apple, and scattered dots.