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10 things to never say to someone impacted by EB

mikekatepoolEB (Epidermolysis Bullosa) is a group of inherited skin disorders in which the patient is missing the proteins needed to produce the correct amount of keratin in a person’s skin. As a result, someone with EB can easily blister or lose skin. Children with EB are also known as “Butterfly Children” because their skin can be as delicate as a butterfly’s wings.

As someone who was born with EB and has lived with it for now 40 years, I’ve heard plenty of well-meaning words from people. Some of them, however, have been out of ignorance or innocence. Some things have been downright hurtful.

Here are some things you may want to refrain from saying to someone impacted by Epidermolysis Bullosa (EB):  Read the rest of this entry