Butterfly Talk

Epidermolysis Bullosa is a rare genetic skin disorder. One thing to describe its rareness is that a doctor or a nurse can be working a lifetime and never bump into this condition. Because of this, there is a lot unknown about the condition and most Doctors are unfamiliar with the condition. I will try to answer some of the most common questions regarding the condition and perhaps clear up some misconceptions. It is estimated that about 10,000 Americans, mostly kids, have some form of EB. With modern medical care, some with the worse kinds of EB can live into their thirties. Unfortunately, by this age most will succumb to a particularly aggressive skin cancer (Squamous Cell Carcinoma) that is somehow touched off by EB. Of these 10,000 effected, less than 300 have the same kind as my son Nicky (he has the Hallopeau-Siemens subtype, also called Severe Generalized), making the RDEB form so rare than only one out of every one million babies is born with it.