Tag : #ebawareness

3 posts

As I explained quite thoroughly (I hope) in my blog “Dumbing Down EB“, EB varies quite a bit. There are forms that are lethal to babies, forms that get better with age, forms that get worse with age; each form of EB has several subtypes, which can all vary wildly. This is why when other patients …
For the past several months I’ve been hosting a show called “Butterfly Talk” (radio: BlogTalkRadio/podcast: iTunes) where I interview different personalities that are working toward EB Awareness or offer information in regards to EB at large. My mission is to get these individual’s EB awareness efforts recognized, mostly because EB being a rare, often called an …
A few weeks ago I read a comment from someone stating how great the advancements for a cure for EB were coming along and how they were happy to wait. I just bowed my head. Just in the past couple of years so many children with EB, similar to Nicky and many even younger than …