York

Hi, I’m Helen and I am the volunteer area coordinator for York.

My journey relating to EDS began ten years ago when my daughter was diagnosed with hEDS. As a parent, I was constantly trying to work out the ‘why’ for the wide range of different issues that we were learning to cope with.

The ‘why’ became clear after I read a book about living with hypermobility, which lead to a visit to a specialist consultant and subsequently an EDS diagnosis. Who knew one book could help to put us on the path to answering all those questions throughout the years!

Accompanying my daughter to the numerous consultants, medical appointments and physio sessions has made me very aware of the need to improve the awareness of EDS amongst the medical profession and more generally, the need to be proactive in spreading knowledge about EDS.

I hope by helping our group to get together, we might all benefit from each other’s knowledge and friendship so that our meetings can positively impact the lives of many ‘zebras’.