It’s EB Awareness week! Every year from October 25 to 31st (the last week of October) is reserved to help raise awareness for Epidermolysis Bullosa, my son’s rare skin disorder. Here’s 10 things this EB mom wants you to know… 1. Yes, it might looks like we have it all under control, and most likely it is. That doesn’t mean we wouldn’t like some help. Even if that just means a kind word. We appreciate those more than you know! 2. Taking Nicky anywhere is very hard. We are often invited to places or events that are hard to get to for him. We wish people would visit us more, is all. I understand this is hard with COVID, but this was true even beforehand and will be true after. 3. We find ways to be happy. It may not be what looks like happiness to many, but we’ve figuredRead More →

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 theRead More →

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 get from point A to point B in the house as he cannot walk. Because he’s too heavy, I cannot carry him, and even if I did, the pressure from my hands wouldRead More →