a look into the future {EB Awareness Week}

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 that life can be lived to the fullest even with EB.

I wanted to use today, the final day of EB Awareness Week, to focus on three stories from adults living with EB.  They are real. They are honest.  It’s not always easy.  Today is dedicated to the butterflies who have flown from childhood to adulthood…

This is Cyndi


“My name is Cyndi. I have Inversa EB, and I just turned 19. A lot of people don’t realize that there are EB -adults-. Most people just think about EB -children-, and yes it does stink to be an EB child, but I find it worse to be an EB adult. For me when I was a child, I didn’t really understand what was going. There wasn’t that many things that I was dying to do that I couldn’t find a way to safely do it. But now as I reach adulthood I’m hitting a lot of walls… Want to go driving? Sorry, I can’t even learn because it would be seen as a DUI because of the pain medications I have to be on. Want to go to college away from the family? That’s not too smart to be away from people who know what to do when I cough up the lining to my throat because of a blister. Even now I sit in the dark because the light is hurting a blister on my eye. I don’t write this to be ‘oh pitty me! How sad is this?!’ I write this to say, don’t forget about us and quit paying mind to us just because we’re not little kids anymore.”

This is Jennifer
My name is Jennifer and I was born with a mild form of EB. At 30 years old I still don’t know what type I have and not sure at this point if I will under go testing. EB affects boney areas for me. Just the tops of my hands, elbows, the front of my legs from the knee down, my ankles and tops of my feet. I really don’t have too many limitations other than just having to be careful and possibly modify certain things. I love to workout and run so depending on what I’m doing or lifting weights I will wear workout gloves. I’m also not able to wear shorts, skirts or a bikini without wearing some type of swim pant because I’m not comfortable showing my legs. My ankles tend to bother me the most and can be painful if there is a sore with my shoes. So I will have to modify when that happens. I normally just use band-aids, ointment and peroxide for care. At times it’s as though nothing is really there and other times it’s more noticeable and red. I’m able to still live my life and at times “forget” it’s there. I would say the emotional pain of it is harder than the physical for me. Despite it all though I know God has a plan and reason for it.

This is Emily

This is Emily, age 41. It was Forty-one years ago today that her parents were told that they would most likely take their one-week-old baby home to die.

Emily was diagnosed with Epidermolysis Bullosa at birth. Her subtype, Generalized Severe Simplex (Dowling Meara) was not diagnosed until she was 28.

“I married at 27 and became a mom at 29. EB impacts me in many ways. I have a 50% chance of passing EB on to my children and so, we made the conscious decision to have just one child. I cannot do things that normal adults can. Gardening, some household chores and many physical exercise can cause days of pain and immobility for me. Years of blistering on my feet have led to multiple orthopedic issues and several such surgeries. I’m lucky enough to have a spouse who not only understands, but often keeps me in line when it comes to my health.

I don’t wear shorts very often, as I still get stares and people often make incorrect assumptions as to how the wounds appear on me.”

One of the questions I often ask myself is what life will look like for Julianne when she is older.  The scars?  They will be there. The blistering and chronic wounds?  They will be there.  The fragility of her skin?  Yep.  Still there.  Will the frank curiosity and acceptance of children dissipate in favor of prejudice and shame more often dished out by adults?

These beautiful ladies are just three… just THREE of the adults affected by EB.  As a mama of an EB child, I often look to them to determine what I should share, or how open I should be when it comes to Julianne.  I know that one day my little butterfly will grow out of childhood, and I want her to be proud of the way I advocated for and supported those in this community.  These and so many others are paving the way for those of us with younger children, and I am thankful. They are living #IRefuseEB on a daily basis, and have been for, in some cases, decades.  They are some of the strongest people I know.

EB Awareness Week is over after today, but for us, for these, and for so many, EB is never over.
There is still no cure.
Join me in praying for and supporting those in search of a cure.
I believe that one day, it will happen.

1 Comments on “a look into the future {EB Awareness Week}”

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