What does life with EB look like?

It looks like swinging on swings at the park.


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Epidermolysis Bullosa is a genetic connective tissue disorder. There are many types and sub-types, each affecting the individual in different ways. Regardless of type or sub-type, one thing that I have noticed about kids with EB, and their families, is the desire to live as normal a life as possible.

Epidermolysis Bullosa seems to be in the news more and more these days. Recently, I was talking to a mama about our daughter’s condition, and she responded, “Oh yes, I’ve heard about that!” Seven months ago, that may not have been the case. EB is definitely in the public eye. There are videos of brave kiddos making the rounds on social media alerting people to this condition, which is great. The more attention EB garners in the news or via celebrity appearances, the more funding we are likely to receive for research. This research works on solving a variety of common problems like chronic itchiness, or finding ways to help wounds heal faster, or even finding a cure.


What does life with EB look like?

It looks like practicing ninja moves before bedtime.


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Our daughter is pretty much like any other four-year-old, activity-wise. She does all the things her siblings do because she refuses to sit on the sidelines and just watch the fun happen. She wants to be a part of the party! And who can blame her?

Granted, there are precautions that must be made. For example, if we know we are going to be in the heat for a while, I come prepared with frozen water bottles and a fan to cool our little princess off. I bring a stroller with us most places in case her feet start to blister. I have a kit in our car with all of the supplies we have at home in case she needs to have a wound cared for while we’re out and about.

We plan our activities and outings around the weather during the summer months; outdoor craziness happens before lunchtime, and then we find indoor activities to do during the afternoons when the heat is at its worst. Overheating can cause more blistering to occur, but if we can work with it in South Texas, it can be worked with anywhere.

I know that when she plays hard, she might get hurt. That’s okay. She has spent too much time being sheltered from normal activity during her lifetime.

Wounds happen.

They. Just. Happen.

And it’s okay. We can bandage a boo-boo or decompress a blister. No problem. The time spent taking care of broken skin is well worth the experience of being a normal kid.


What does life with EB look like?

It looks like swimming on a hot summer day.


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We often encounter curiosity when we are out and about. Sometimes the curiosity is good, and we have the chance to educate and inform. Sometimes the curiosity looks like a kid yelling, “what’s wrong with her legs!” repeatedly in the grocery store while the mom ignores him and he continues to yell all the louder. Sigh.

Julianne is just starting to realize that moments like this happen because of the appearance of her skin, and these moments become a chance to talk about the importance of kindness and for us to reassure her that there is nothing “wrong” with her, that she is beautiful just the way she is. My heart will break as she encounters ugliness in the world. It’s unavoidable, really, and that’s tough to deal with some days.

Epidermolysis Bullosa is teaching us so much about perseverance in the face of adversity and how to love unconditionally, even when someone (intentionally or not) hurts you.


What does life with EB look like?

It looks like bright smiles.


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The other night I woke up to the sound of giggles rising from the toddler bed beside me. Our daughter was laughing… in her sleep! I had heard many noises come from her during the past 7 months at nighttime… crying, whimpering, yelling, thrashing around, trying to get comfortable in a bed that was bigger than she was used to. But giggles? Laughter?!? It made me smile in the darkness and realize that when it comes to life with EB, laughter really is the best medicine. Laughter covers the moments when there is hurt and reminds us all that she isn’t an EB kid, she’s just a kid who happens to have EB.

She is a spunky, chatty, slightly bossy little thing.

She has the most precious chubby cheeks, the sweetest dimple, and amazingly awesome hair.

She loves to dance, she loves to color, and she loves to eat eggs like they are going out of style.


What does life with EB look like?

Beautifully chaotic, and I wouldn’t have it any other way.

**originally posted on No Hands But Ours**

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