(My name is Ross and my partner has hEDS. I’m her medical advocate and I’m sharing what I’ve learned along the way. I hope this helps. I am not a medical professional. This is not medical advice. Always consult a medical professional (preferably one who specializes in hEDS).

What I Wish I Knew Before Seeking Care

Pentad Super Syndrome (The Root Cause of hEDS)

Hotscratchers Advocates Guide to Surviving hEDS

Research Papers & Family Guides:

For Friends and Family

hEDS Family Guide

How to support a loved one with hEDS

Common dismissive Comments People with hEDS hear

Medical Research on hEDS Complications

Complications From Late-Diagnosis

hEDS Diagnosis and Testing

Blood Clots and Other Vascular Issues in hEDS

Periodontal Disease and Resorption in People with hEDS

Stomach Pain Misdiagnosis and Tethered Cord Syndrome in hEDS

Links to Resources

Public Google Docs with Links to Resources & YouTube Videos

eBooks on hEDS