Personal EB Stories
Get to know the incredible people who make up our Epidermolysis Bullosa (EB) Community. Through their personal stories, they share their experiences and offer insight into what it’s like to live with EB or have a loved one affected by it.
Feeling inspired to tell your story? Your voice matters. Share your story
Brooks Venema
In Loving Memory
Addelyn Elizabeth Farah
In Loving Memory
Tyden Maze
In Loving Memory
Alayah
Emeryck & Dasha
Brooklyn & Morgan
Matthew & Jessica
Caroline Georgia
In Loving Memory
Logan
Addie & Katelynn
Nola & Enzo
Sarah Oliveira
Warren Lee Abeyta
In Loving Memory
Hodges R. Caldwell, Jr.
Destiny Fuentes
In Loving Memory
Hannah R.
Kaylyn
Nicole Esser
Abby Jones
Walker Family
In Loving Memory of Chance Walker
Abdullah Arekat
In Loving Memory
Hayley Winder
Nicole Ramsey
Jose Vivanco
Winnie Bruce
Savanah Zech
James Dylan
Jane Scherlag
Annie Keys Kendrick
Faith Smith
Rabia
Melissa Barriga
Veronica Stewart
Zora Rowe Redd
Hunter
Jan Marhefka
Jennifer Hazan
Aaran Schrader
Ella Suchocki
Carter Dvorak
Jennifer Kim
Jeremiah Marshall
Woody Brown
Sarah Morrill
Bowen Kim
Mark Feather
Penny Warren
Solomon Bonner
Taylor Dean
Lindsay Martin
Anjali Rajan
Andrew Conrad
Williams Family
Jack Hartmann
Melissa Curtis
Monique McKissick
In Loving Memory
Bruce Gunn
In Loving Memory
Kristin Nugent
EB to Me
In 2014, we ran an “EB to ME” campaign that asked the Community to tell us, in their words, what EB means to them.