Epidermolysis Bullosa by the Numbers
As EB Awareness week is approaching, I always hear the “numbers” of EB being floated around. One official website states the incidence of EB is 1 out of every 20,000 births. Another official website states One in about 17,000 live births. Yet another official website states 1 in 50,000. The truth is, most likely nobody knows for “sure”. I am telling you this because I remember quite clearly a gal that was a waitress at an EB event who then went to the organizer to tell her afterwards that she thought she had EB, how her feet always blistered and nobody knew why. She later found out she indeed had EB. This happens because the genetics of EB are so unique and vary so much from patient to patient that the diagnose, especially in the more light forms, can be almost impossible to achieve unless you know what to look for. The simplexRead More →