Hi, My name is Zara. I am 10 years old and I live in Dysert, Corofin, Co. Clare. I am in 4th class in Toonagh School.
I had an accident which left me with a severe spinal injury and have to wear a halo brace to keep my neck straight. This halo brace can hurt sometimes but it’s seriously limiting my fashion choices. Because of the injury, my legs aren’t working too well so I’m in a wheelchair. Everyone is working very hard to fix my neck.
After lots of tests it turns out that I have Ehlers Danlos Syndrome (EDS) which means I have to travel abroad for treatment.
What is Ehlers-Danlos Syndrome (EDS)?
Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue disorder that is caused by a defect in the structure, production or processing of collagen or proteins that interact with collagen. Collagen is kinda like your body’s glue. It’s what holds your skin, joints, blood vessels and other major organs in place. It typically presents itself in childhood or young adulthood with hyper-mobile joints prone to misalignment, stretchy skin that tears easily, and fragile blood vessels prone to cardiovascular complications such as aneurysms.