Family Stories

Anjali Rajan’s Story
College Freshman Anjali Rajan writes about her experience living with EB for her college essay to New York University:
“What’s wrong with your nails?”
“Why do you have so many scars and blisters?”
I never really had the answer to these questions, and I didn’t want to answer because I didn’t want to be labeled as even more “different” than I already was….

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Patrice and Matthew Williams
Like many of you, my husband, Matt, and I had never heard of Epidermolysis Bullosa (EB). That is, not until February 27, 2009 when our son, Jonah, was born. Jonah was born missing the skin on his elbows, hands, and from his knees down.

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Warren Lee Abeyta Story
Warren entered into this world on February 4th, 1970. The doctors told us that Warren was born with Epidermolysis Bullosa. He also said that children born with this disease only live to around 15 years old.

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Jack Hartmann
I sit here and talk...as you sit there and gaze.
It feels like I'm talking to a brick wall that will
never drop. It makes me feel so different...as if I'm not human
or something.

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Melissa’s Story
I was born September 29, 1977 in Poughkeepsie, NY. My father has Dominant Dystrophic Epidermolysis Bullosa, and a day or so after my birth it was evident that I too, had EB.

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Monique's Story
My name is Monique Elena Mori McKissick, married to a wonderful husband, own my own home, work full time at a utilities company and I have Recessive Dystrophic Epidermolysis Bullosa. Aside from my parents and my husband, EB is greatly responsible for shaping the person I’ve become today

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Maria Oliveira, Making Every Minute Count, Amidst All the Pain
Simply put, living with EB hurts, but as cliché as it may sound you need to take the good with the bad. My daughter, Sarah, was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB).

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Bruce Gunn, Overcoming an Obstacle
During high school, my classmates were getting ready to take their driving tests and permits. I really wasn't focused on that during high school and I knew I wasn't ready. I have Recessive Dystrophic Epidermolysis Bullosa - Herlitz (RDEB-H) and there are a lot of things I wasn’t able to do.

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Kristin Nugent
Recessive Dystrophic Epidermolysis Bullosa (RDEB) is a relentless disease that does not stop at just compromising the skin. Sadly, it also affects mucosal membranes like the mouth, throat and esophagus which makes eating and EVEN drinking a chore.

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Grace’s Story
I am writing to you in honor of a beautiful butterfly. My daughter Grace Catherine Peshkur was born on March 29, 2002. Grace was born with denuded skin on her feet, hands and mouth. She was unable to take a bottle and cried constantly.

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Andrew Conrad's Story
Andrew Conrad is a young professional who was born with Recessive Dystrophic EB. He grew up in central Illinois and graduated from the University of Illinois with a bachelors in economics in 2009. In 2011, he moved to Chicago where he continues to reside. Andrew is an avid crossfitter and runner. He also loves to travel and has plans of touching all 7 continents by age 30.

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