Epidermolysis Bullosa Info & Awareness
When we found out we were pregnant we were so excited, we had been trying for 6 months. After a typical 9 months of a perfectly normal pregnancy, I gave birth to a beautiful 7lb baby boy which we named Gabriel, after the Angel in God’s Army. Little did we know what a soldier we…
By Silvia Corradin From: Special Mommy Chronicles (Unpublished Column from December 10, 2006) A couple of weeks ago my son turned ten years old and it felt like a gigantic milestone. For the first time in years the image of him in the incubator when he was a baby kept haunting me and my dreams. Why did I…
By Emily Spurrier From her Blog: Dys-Located This is the third in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** My mother turned 28 on October 25, 1974. On that same day, she received a phone call advising her that her one-week-old infant would only live for…
By Maria Oliveira Finding a way to keep dressings in place for the upper body can be quite a challenge. Some people do well with ready-made garments made to accomplish this, such as Tubifast garments made by Molnlycke. However, every patient is different and in my daughter Sarah’s case, these garments were too snug, especially in…
By Emily Spurrier From her Blog: Dys-Located This is the first in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** Some would describe EB as horrific. Some use words like “Painful”, “devastating”, “horrible”, “dreadful” or “insurmountable”. In reality, for several who do not know what EB is,…
By Silvia Corradin From: Special Mommy Chronicles (Unpublished Column from November 7, 2006) “Don’t tell me that you understand, Don’t tell me that you know, Don’t tell me that I will survive, How I will surely grow. Don’t tell me this is just a test, That I am truly blessed, That I am chosen for this…
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…
