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.

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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

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