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. 

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