Epidermolysis Bullosa Info & Awareness
I thought I would have to teach my child about the world. It turns out I have to teach the world about my child with Epidermolysis Bullosa Adults with Epidermolysis Bullosa once were children with EB. They too, need understanding, acceptance and awareness. Children with Epidermolysis Bullosa’s spirits are killed every day because of society’s…
The moment you realize you’re the expert on Epidermolysis Bullosa. And you’re in the Doctor’s Office. Cheers old Sport – And help us raise Epidermolysis Bullosa awareness Those with Epidermolysis Bullosa Need our help in raising awareness Why wouldn’t you raise awareness for Epidermolysis Bullosa? So you’re telling me… most doctors have never seen someone…
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, not even the best psoriasis cream can help. And when you realise it also affects the internal organs, then you see it as diabolical. ~Eddie Vedder
There is no perfect way to be an EB parent. You just do the best you can with all you’ve got. ~Support Epidermolysis Bullosa Awareness
In loving memory of every EB patient who has lost their battle against EB and the ones who continue to conquer it! Support Epidermolysis Bullosa Awareness
This is my book!! Butterfly Child: A Mothers Journey by Silvia Corradin “Children with EB are called “Butterfly Children” because EB is described as a skin condition in which the skin is so fragile, it is like butterfly wings.” Like any mother, Silvia never imagined she would have to to bury her first son, Alex, who…
Jodi Champagne, who is the photographer who documented my son Nicky’s life with Epidermolysis Bullosa, was recently interviewed by an online video magazine and this is the interview– read this. Get the Book exclusively at BLURB http://www.blurb.com/b/5024440-courage-under-wraps and on iTunes! https://itunes.apple.com/us/book/courage-under-wraps/id803462653?mt=11
Originally posted by Silvia on her blog: http://blog.silviaskingdom.com/?p=852 When you know more than the real doctors do about your child. When you consider internet friends you’ve never met to be some of your best friends. When you think it’s a good day if you don’t see any blood. When you get asked at least once a week…
Here’s just one of my EB Awareness graphics. This quote is available as a Sticker you can purchase in my Zazzle store CLICK HERE to see it! Proceeds go to the costs associated with the upkeep of this website, which uses the Indexer team for their marketing strategies. Anything extra goes into a special fund to help with…
