EB Awareness Week 2016

I know I am beating the drum of Epidermolysis Bullosa Awareness every single day, especially on my ebinfoworld.com facebook page, but this cause is very close to my heart and it really needs everyone’s attention. There are so many conditions on this planet, many of them rare, and it’s hard to get the word out often because our voice can drown in the sea of worthy causes. The rarity of some like EB, however, makes it very unlikely that enough money is raised to find for a cure. Let’s face it, investigating EB in not exactly an attractive proposition to giant companies who make money by alleviating human suffering. The more common the condition, the more money they make. ItRead More

What Does It Mean To Have A Child With RDEB?

Since this is “EB Awareness Week” (#EBawarenessweek) I wanted to write a short blog about what is like to have a child with Recessive Dystrophic Epidermolysis Bullosa. For me, it means having to inspect every inch of my son’s skin every night. It means taking a sterile needle to lance every new blister and drain them so they don’t get any larger. It means deciding how to bandage each wound, because they all need different ointments and bandages depending on how far along in the healing process they are. It means having a house full of mass quantities of bandages and creams, all of which will only last a month. It means having to help my son getRead More