You know, while being laid up for the past week, I thought I’d take more time to myself to blog. Alas, I didn’t do nearly what I had expected, except to plant myself on our seeping couch. (more…)
A fellow blogger wrote this: I just wanted to share
Seems like EB is getting more attention in the media these days. Often, the attention is focused on the kids, the “butterfly children”. I get it. Seeing kids suffering in the way that so many do is heartbreaking and gut-wrenching. I see them and I want to do something to help… ANYthing to help alleviate their suffering. The fact that I am a mother to one of these sweet children makes my desire to find a cure strong, while at the same time wanting her to live her life to the fullest without any regard for the condition that affects her daily.
There are also adults living with EB! Yep. It’s true. Some forms of the condition take the lives of children when they are far too young, some forms don’t. These children grow up living with EB, become adults living with EB, and are passionate about letting people know…
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EB (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
One more week. We’re hoping that’s what I have left, is one more week in this bandaging that makes me look as though I have elephantiasis of the big toe. Read the rest of this entry
For those who are curious: it takes 1/20th of the time to rip apart 1/2 a knitted sock (because you accidentally dropped and unravelled all your gusset stitches; both sides; when your kid continuously said “hey mom! Watch this!”) as it did to create it.
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So, this is happening. It may be another failure.. Or it may not be.. Read the rest of this entry
Anyone who knows me knows that I’m a stickler about spelling and grammar. At times, I’ll overlook it, chalking it up to Autocorrect on our phones. I know, as my Iphone does it all the time. However, when it’s blatant or persistent, it feels like nails on a chalkboard. Read the rest of this entry