Health officials make a shock move that sends a ripple of fear through the EDS community. Anusha meets the family of Ruby Hill, who starved to death after a long battle with EDS. And we hear from the experts who say the evidence doesn’t stack up.

See photos, video and read more about Ruby's story in a special digital feature: Sent home to die: What a missed diagnosis says about the medical establishment

A special thanks to the young women and their families for sharing their stories for this series. And thank you to the doctors, surgeons and specialists in New Zealand and overseas for sharing their medical knowledge and expertise.

If any of these stories affect you – you can find more information about EDS, at ehlers-danlos.org.nz - or you can look up EDS NEW ZEALAND on Facebook and Instagram.

Go to this episode on rnz.co.nz for more details