Newly Diagnosed: You Are Not Alone on Your Journey

Whether you are a patient or a caregiver, it’s important to remember that you are not alone on this journey with epidermolysis bullosa and that others have been in your shoes. Here’s a collection of some of our columnists’ words that they would like to share to help guide, inspire, and encourage you.

How We Began Educating Our Community About EB

Columnist Patrice Williams shares a touching letter she wrote and distributed in her neighborhood when her son, Jonah, was 20 months old. She believes that the more people who know about epidermolysis bullosa (EB), the better.

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I’m Learning to Be Proud of My Body

A photography session prompted columnist Lena Riedl to think about her relationship with her body and how she’s come to accept and appreciate it. Looking “different” does not make you any less beautiful.

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If You Are Struggling, Find Your Army

Patrice and her husband struggled when they first brought Jonah home after he was born, but, she says, the beauty of the hardest of times is that you realize you are not alone. Her army of caregivers were always there for them during the first few years of Jonah’s life.

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After Much Trial and Error, Here’s Our Best Bandaging Techniques

Finding the best bandage routine for Jonah has been a process of trial and error, Patrice writes. Here she shares some of the products and strategies she and her husband use to address blisters and wrap wounds for him.

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