Personal Stories

Hear from the experts about what life is like in Ireland for EDS/ HSD patients -Those who are living through it.

If you would like to be included in this space, contact us.

Salt

My symptoms have been exacerbated by the lack of understanding in the Irish health system

Evie

People called me lazy

Ruby

I will want my family but I can't. That makes me sad.

Leanne

My issues lead to an eating disorder

Sarah M.

I wailed inside the airport... I had to be comforted by strangers

Lette

By August I was in a wheelchair

Kayleigh

I worry more each day about my deteriorating condition

Stevie

They printed out a Wikipedia page to give any doctors that would be treating me