Epidermolysis Bullosa community

Epidermolysis Bullosa (EB) is a group of rare, inherited disorders that affects skin and mucous membranes. The clinical picture ranges from mild to severe. Below, you'll find testimonies from patients who live with this genetic disease.

Annie Bryce Hoffman Atkinson by Margaret published 7 months ago

One day in 1981, I received a call from Father Guillermo Wasson of "Our Little Brothers"; a friend of mine since my childhood, asking to see me. When I met him, he told me that one of his sons, while doing his internship year in the hospital of ISSTE, found a little girl abandoned for one year and a half in the hospital. He wanted the Father to take her to his orphanage called &quo...

Growing up by Melissa Smith published 7 months ago

My entrance into the world, twenty-four years ago, was rather dramatic. It wasn’t enough that I was midwife’s first solo delivery, or that I turned over in my mum’s womb after all of her waters had gone, or that they couldn’t give my mum painkillers. Oh no, I needed more than that. You see, when I finally emerged, I missing an awful lot of skin.
My feet looked like blobs of raw, tenderised steak; my knees and stomach were devoid of skin from being curled into the foetal position; the skin on my hands resembled w...

Video: Liz and Claudia by IPPOSI Patient Video Diaries published 8 months ago

Liz from Ireland talks about EB...
Video courtesy of the: Irish Platform for Patients' Organizations Science and Industry:


Body Image by Melissa Smith published 9 months ago

I was born with a rare genetic skin blistering condition, called Epidermolysis Bullosa (or EB as it’s better known). The best way I can describe it, at least the type I have, is waking up every day with new second degree burns, caused by smallest amount of friction or trauma, like turning over in bed. The effects of EB are incredibly visible; I have to wear bandages covering my limbs, I regularly have blisters and wounds on my face and neck, my left eye is scarred, and I’m often in my wheelchair.
As you can imagine, this ca...

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