dolores: JUNCTIONAL

As a young girl, acceptance did not come easy for me.  My skin was different from others'.  It wasn’t easy for others to accept me.  It wasn’t easy for me to accept myself.  I would often hide myself – hide my hands, wear gloves if I could – hide my legs, wear knee socks pulled up as high as they would go.  You can only imagine what I looked like going to the beach with my knee socks on!

I am Dolores Cogliano.  I have EB.  I have Junctional Non-Herlitz EB.

While preparing this message for you I was trying to come up with something to talk to you about that would best relate my cause both personally and scientifically.  Frankly, I had a hard time with this.  I consider myself one of the lucky ones, you see, as I have lived to tell my story, the story of the lifelong struggle experienced by everyone living with EB.  Most babies born with the severe version of what I have do not live past infancy.  This is Epidermolysis Bullosa or EB.

Here is my story, in a nutshell.  I ask you to visualize…

You are 10 years old.  You are on vacation with your parents and sibling.  It’s a road trip driving up the Northeast coast to visit the beautiful New England states.  It’s late August, one of those “dog day” afternoons of mid-August, extremely hot and humid.  We stop at a motel in New Hampshire.  Its alluring pool calls out to us to jump in.  All we want after our long ride is to get some relief and jump into that pool.  Dad checks us in.  My brother and I jump into our bathing suits and jump into that pool!

Well, I can tell you that the first five minutes couldn’t have been more glorious. The moments that followed … horrendous. What can I possibly mean by this… 5 minutes of pleasure … followed by horror?

It took just five minutes for the hotel manager to come running toward us.  He signals for us to get out.  He states there are several concerns, several issues, several complaints, about us remaining in the pool.  Our blistered bodies and scabbed skin were revolting to the other guests.  They wanted us out of their pool, out of their hotel, and off of their property.  They told us to leave then and there.  We were humiliated.

This scenario has been the rule, not the exception, in my life living with EB.  I grew up in the 50’s.  It was the “dark ages” when it came to information about EB. I was born with nearly no skin, almost raw, it was thought I would not live. I could not be held for fear of damaging my already wounded body. There were stares.  There was rejection.  There was revulsion.

I have lived through the hardship of a childhood being teased by my classmates in elementary school.  I have lived through the heartbreak of my young friends not wanting to hold my hand.  I have lived through the heartache when moms in the neighborhood didn’t want their children to play with me.  I have lived through adolescence and the added loneliness that EB brings to those already difficult teenage years.  And, yes, I have lived through the devastation of not having loads of boyfriends knocking at my door!  I have lived through the hectic life of a college kid trying to get my “different-looking squareness” to fit into that “circle of together-looking” fellow students.  I have lived through the tumultuous young adult times of finding a career that was both a good match for my interests and skills, yet accommodating of the daily chore of living with EB.  I have lived through the disappointment of being rejected during job interviews when my un-hidden hands didn’t look so good to a prospective employer.  Currently I am living with a concern:  that squamous cell cancer will arrive.  My next battle will begin.
My life has been a journey.  And it has been nothing short of a very long journey for me to get to where I am today.  Living with EB is an on-going journey until we find a cure.  So my journey continues … living with EB … and living with the very new community of acceptance of EB, the very current science and research on EB, and the very real hope that we will reach our goal of finding the cure for EB… in MY lifetime.