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
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Alex and Christina's Story
I remember when my son, Alex, was born; he was missing skin from his hands and feet. His condition continued to deteriorate in the next couple days after his birth. I felt terrified and alone. Receiving the diagnosis of EB brought little comfort. It was devastating and to say it changed my life forever is an understatement. EB means a great many things to me now. It means having to reach inside and find a strength I never knew existed before. It means having to put on a brave face even when I feel helpless and afraid.
Watching someone you love so much suffer and not be able to take it away is something that, at times, seems impossible to endure. It means many nights filled with anxiety and tears because there is no time or place for that during the waking hours. It means giving up that fantasy of a future that never really existed and focusing on the present. It means paying extra attention to all the good moments in life. I appreciate and fully enjoy every triumph, every pain free day, every smile, and every hug. It means realizing that every day truly is a gift. Most of all EB means filling my heart with hope instead of despair and fear. I hope that my son will continue to overcome all the obstacles EB causes. I hope that he is able to lead a relatively normal life despite this horrible disease. I hope that he will live to see adulthood and beyond. I hope that someday there will be a cure that will end his pain and suffering. - Christina, Alex's Mom
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Shaelynn and Veronica's Story
Do you know what it means to have a child with Epidermolysis Bullosa? For me, it means having to thoroughly inspect every centimeter of Shaelynn's skin every morning and every night. It means taking a sterile needle to every new blister in order to lance and drain them so they don't get larger and more painful. It means having to console her and apologize while she repeatedly says "no no no" in an effort to get me to put the needle away.
It means bleach baths to prevent infection in her many open wounds and dousing her with mass quantities of ointments and dressings and specially designed bandages otherwise intended for burn victims. It means only gentle hugs and kisses and no holding hands, and removing elastic from every diaper. It means ignoring stares and smiling through ignorant comments from people who don't understand the battle we fight every day. It means all of these things but most importantly it means having a child who smiles in the face of adversity. It means seeing heart, passion and strength in a very tiny warrior. It means having a pint size hero that can laugh when most others would cry. It means seeing all the good that comes with the bad - and knowing in my heart that I am an incredibly lucky mommy to have been blessed with a brave butterfly child. - Veronica, Shaelynn's Mom
More Stories
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Brooklyn & Morgan
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Matthew & Jessica
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Caroline Georgia
In Loving Memory
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Sarah Oliveira
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Warren Lee Abeyta
In Loving Memory
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Hodges R. Caldwell, Jr.
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Destiny Fuentes
In Loving Memory
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Nicole Esser
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Abby Jones
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Walker Family
In Loving Memory of Chance Walker
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Abdullah Arekat
In Loving Memory
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Hayley Winder
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Nicole Ramsey
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Jose Vivanco
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Winnie Bruce
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Savanah Zech
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James Dylan
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Jane Scherlag
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Annie Keys Kendrick
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Faith Smith
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Melissa Barriga
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Veronica Stewart
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Zora Rowe Redd
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Jan Marhefka
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Aaran Schrader
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Ella Suchocki
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Carter Dvorak
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Jennifer Kim
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Jeremiah Marshall
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Sarah Morrill
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Bowen Kim
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Mark Feather
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Solomon Bonner
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Lindsay Martin
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Anjali Rajan
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Andrew Conrad
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Williams Family
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Jack Hartmann
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Melissa Curtis
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Monique McKissick
In Loving Memory
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Bruce Gunn
In Loving Memory
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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.