EB Awareness Week!

Today is the kick-off of EB Awareness Week.

If you’ve read my blog for a while, you know what EB is.

If you’re fresh to the awesomeness found in this corner of the internet, you’re about to find out what it is!

If you’re reading this because you have a child with EB and found me somehow, welcome.


I first heard about EB in the spring of 2014.  It was late March, to be exact.  We were pursuing international adoption with China, almost all of which are medical special needs adoptions, and I saw the face of a child who pulled at my mama heart. I knew that she was meant to be ours.

Her medical need?  Dermatitis.

My reaction?  Absolutely.

I mean, we knew all about “dermatitis” in our family between eczema and allergic reactions!  Right?

Wrong.

It quickly became clear that the “dermatitis” listed wasn’t your run-of-the-mill eczema.  It wasn’t anything like the allergic dermatitis that we were familiar with.  It was something more.

The “what” was the question.  What was this skin condition this beautiful child had?

After paying extra to have some of her Chinese lab work translated into English, we stared at the words that have become a part of our normal, “epidermolysis bullosa”.

For most families, the diagnosis is a shock.  I won’t say that we experienced a small amount of fear, but for us, knowing from the start that we were walking into the EB world made it a little easier of a transition.  We, after all, had nine months of knowing about EB before meeting Julianne.  Most families?  They find out about EB when their child is born and something goes dramatically wrong.  Skin missing, blisters forming, the inability to hold the baby without hurting them.   Children with the condition are often referred to as “butterfly” children because of the fragility of their skin.

Epidermolysis Bullosa in a genetically inherited skin disorder.  The easiest way to understand EB is to understand Velcro.  Velcro works because it has hooks on one side and loops on the other.  The hooks and the loops hold two pieces of something together.

Skin is much the same.  There are layers that need to be held together.  Between the skin are proteins that act as the hooks and loops.  For people with EB, some of those proteins are defective or missing altogether.  The severity and type of EB a person has depends on which layer of the skin is affected, and how much of the protein is missing.

This is obviously a VERY basic description! 

butterfly pic tagged

 

In the China adoption world there are some who make the choice to not talk about their child’s medical needs.  I totally respect those choices.  For us, we have no choice.  Julianne has visible blisters, scarring, and torn skin every day.  Even on days that I consider to be “good skin” days, she is the recipient of stares and questioning gazes.  For her sake, and for the sake of making EB unworthy of the title “The Worst Disease You Never Heard Of”, I talk about EB.  I share about our life, I promote ways to help.

Although I write about EB outside of this seven-day window, I appreciate this chance to have a full week to focus on this condition.  I will be sharing  more this week about EB – information, facts,  and ways to be involved with our community.

Clickable of the Day:  Check out this blog by another mom.  She has EB, and also has children with the condition.  Her words come from a place of understanding both having EB and mothering a child with EB.  She is a huge asset to our community, and is always willing to answer questions.  She has become a first-responder resource for families who experience the shock of having children born with EB, and how to handle that during those first crucial days and weeks in the hospital.

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