All In Her Head

Anusha meets Sophie and Selah. Both have EDS, but their experiences were vastly different. So why are some women with Ehlers-Danlos syndrome told their pain is psychological? Is it medical misogyny?

*Correction: Trinity was in Auckland Hospital in 2023, not 2022. She was diagnosed with scurvy in 2024, not 2022, as originally published.

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

A doctor in Germany says he can treat complex vascular compressions. Health officials say it’s experimental and dangerous. Jemima’s family say he saved her life, but we meet another woman who wishes she never went under the knife.

Content warning: this episode contains graphic descriptions of surgical procedures and might not be suitable for younger listeners,  please take care while listening.

See photos, video and read more in a special digital feature: Life changing diagnosis or dangerous experiment: “He left me in a mess”

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

Another young woman fights for her life in hospital while doctors' debate what they see on her scans. So how is it that different doctors can look at the same image and come to completely different conclusions?

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

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

Anusha meets the doctors facing scrutiny for treating Ehlers-Danlos syndrome. Meanwhile, Rachel takes a leap of faith, heading overseas to meet a surgeon who could save her life.

Read about a pledge made by Australian vascular surgeon Gert Frahm-Jensen to support new research into EDS: Australian surgeon pledges Kiwi patients' fees towards new vascular compressions research

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

Sophie Roberts was a normal active 15-year-old, used to hours each week of ballet and Crossfit. Then she started feeling dizzy, often fainting, and eventually those episodes would lead to seizures. For three years she struggled through high school until her gastro symptoms started. Eating became hell. Sophie searched for answers, and while some doctors believed she was suffering from Ehlers-Danlos Syndrome and related vascular compressions, others were convinced her symptoms were psychological. Her story is being featured in RNZ's new investigative podcast All In Her Head by Anusha Bradley which explores why this complex illness has divided the experts over diagnosis and treatment. Both join Kathryn to discuss.

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

Rachel is starving to death, but doctors can't agree what’s wrong with her. In desperation her family fundraises for life-saving surgery she can only get overseas. Rachel has Ehlers-Danlos, a syndrome dividing the medical community.

See photos, video and read more about Rachel's story in a special digital feature: The girl who couldn’t eat: An RNZ investigation into the controversy over a debilitating illness

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

A young woman is starving to death. Some doctors say she needs life-saving surgery; others say the diagnosis doesn't exist. All In Her Head is a seven-part investigative podcast from RNZ’s award-winning journalist Anusha Bradley about Ehlers-Danlos Syndrome (EDS), and explores the grey area where medicine, belief and evidence collide.

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