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. It simply is not a good business practice to spend a fortune and tie up minds and laboratories to develop cures only a few will need.

Part of me understands that, at the end of the day it’s all about the money, but the one thing that differentiates children like my son with Recessive Dystrophic EB, is how much pain they have to live in and how their life is cut short. They don’t call it “The worse disease you never heard of” for no reason. It’s true.

There are many Doctors at this point who are looking for things to help EB children, certainly 10 fold more of what was available 20 years ago when Nicky was born. Still, while I am happy that they have found products that help heal the wounds, the reality is that healing wounds is just one piece of the puzzle. Trying to find a way to truly “cure” this inherited genetic defect is another. At this point, while I am certain that at some point in the future an answer will come, the question for ME, of course, is if it will come in time to save my son.

I often wonder if I will be this involved if Nicky was ever to pass on. I don’t know. I can’t answer that. It is my hope that I will, but I can’t make any promises. Right now I can’t even think about that.

Here’s some links for more information about EB: