EB is a horrible disease, a disfiguring disease that kids are born with and it’s unrelenting suffering from the beginning til the end. It’s lifing in bandages, living on morphine drip. It’s horrendous. ~Ian Ziering
When I first heard about EB, it was quite hard to grasp the intensity of the condition. It’s about the most insane skin disorder you can imagine. And when you realise it also affects the internal organs, then you see it as diabolical. ~Eddie Vedder
Having a child with EB is tough. You can survive if you can let attitudes & comments from others roll off you, knowing that your journey as an EB parent is important. You are your child’s voice, their nurse, their advocate but most of all their parent, their heart & soul. YOur journey will be…
You know you’re an EB Parent when… you realize you could get a job writing appeals letters to the insurance.