Epidermolysis Bullosa Info & Awareness
The Official Patient’s Sourcebook on Epidermolysis Bullosa: A Revised and Updated Directory for the Internet Age This book has been created for patients who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for…
Written by an Anonymous RDEB Patient I have had these issues since birth and have tried a myriad of medications that have been prescribed or suggested by prior physicians. The list includes mineral oil, senna products (liquid and herbal tea) ex-lax, milk of magnesia, dulcolax, docusate sodium, Metamucil, Miralax, Benefiber and many others that I…
I struggled a lot to make this, the first post on this site particularly for Nicky’s wounds. In the past I’ve been victimized by many to do so, even from EB patients and other parents, Facebook nearly deleted my account for posting photos (you can read about that HERE), *but* I always feel as if…
I couldn’t help but be amused the other day while visiting Target by one of these little packets containing Hydrocolloid Bandages. I was amused by two reasons: 1. Obviously amusing is the fact that I would need to get hundreds just for one week’s worth of bandage changes for Nicky. Ha Ha 2. Weirdly amusing…
Apparently the daily life of my son is offensive to Facebook and whoever ‘reported’ this photo to Facebook as a violation of the statement of rights and responsabilities. Huh? No, this photo isn’t pretty. That’s the point of posting it, isn’t it? To SHOW what EB is really like. To show the suffering EB patients endure. We’ve…
