Patient Stories

We understand that EDS/HSD can make you feel like you all alone, and while each person’s journey is an individual one, there is a common thread that ties us all together – EDS and our journey to diagnosis. Please feel free to read stories from other kiwi’s about their journey and life with EDS/HSD in their own words. 

our Stories


Lisa Preston

Lisa Preston


Sharleen Bigham

Sharleen Bigham


Brittany Cahill-Carnaby

Brittany Cahill-Carnaby


Tara Apperley

Tara Apperley


A Carer’s Story

We’re on the look out for some people to contribute their health stories (journey to diagnosis and what has happened since) for our EDS NZ website. These stories will hopefully help other people in their own journeys to know they aren’t alone and that there are ways to get support in New Zealand.

If you would like to have your story on our Ehlers-Danlos Syndromes New Zealand website, please contact us through contact@ehlers-danlos.org.nz