Communauté Epidermolyse bulleuse

L'épidermolyse bulleuse (EB) est un groupe de maladies rares héréditaires qui affecte la peau et les muqueuses. Leur gravité va de léger à mortel. Vous trouverz ci-dessous des témoignages de patients qui vivent avec ces maladies génétiques rares.

Annie Bryce Hoffman Atkinson par Margaret publié il y a 7 mois

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 par Melissa Smith publié il y a 7 mois

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 par IPPOSI Patient Video Diaries publié il y a 8 mois

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

Body Image par Melissa Smith publié il y a 8 mois

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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Activité récente dans la communauté Epidermolyse bulleuse