Epidermolysis Bullosa Info & Awareness
By Emily Spurrier From her Blog: Dys-Located This is the first in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** Some would describe EB as horrific. Some use words like “Painful”, “devastating”, “horrible”, “dreadful” or “insurmountable”. In reality, for several who do not know what EB is,…
Through the years of running this website I’ve been asked questions about Epidermolysis Bullosa that follow in the category of misconceptions. People believing some things regarding this condition that are false. This is not only from strangers, friends and family, but from the medical community, as well as actual EB patients and parents. I’ve asked…
For New Parents I put together this page with the aid of a leaflet distributed by DEBRA UK called “Dystrophic Epidermolysis Bullosa Initial Information for Parents”. The leaflet this information is taken from is specific about caring for newborns of the “Dystrophic” form of Epidermolysis Bullosa, however, most of the information is valid for the…
