Epidermolysis Bullosa Info & Awareness
I promised a few friends who could not make the conference, that I would take ‘good notes’ about products, talks and progress in the treatments for EBers from this event, so I will try to be as descriptive as I can, noting that a lot of the lingo is way beyond my level of comprehension,…
By Emily Spurrier From her Blog: Dys-Located This is the fifth in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** Following the demise of my first serious relationship, I figured honesty was still the best policy with those I had dated. With the first potentiality, however, intimacy was not an…
This is part 2 of a series of posts I will make with wound photos that Facebook does not allow me to post. Post #1 is here. I took some photos of Nicky’s wounds to be shared at the Hydrotherapy yesterday, June 18, 2012. I just updated Nicky’s journal about how he is currently doing,…
By Emily Spurrier From her Blog: Dys-Located This is the fourth in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** By the time I was fourteen, I was able to walk long distances, but could not do so in shoes. I was in an adapted physical education…
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By Silvia Corradin From: Special Mommy Chronicles (Unpublished Column from December 10, 2006) A couple of weeks ago my son turned ten years old and it felt like a gigantic milestone.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…
