Epidermolysis Bullosa Info & Awareness
EB, yes, Epidermolysis Bullosa as it may, it’s probably one of the most misunderstood conditions out there. I wrote an extensive “Common Misconceptions” page long ago and even a long “FAQ page” for those with extensive questions about the disorder. These pages have been up on this website for over a decade, in an effort…
Here is more information about several talks from the conference from July 31, 2012: Anesthesia for your child with Epidermolysis Bullosa & Interdisciplinary EB care These two talks, which I will bunch up together simply because I don’t remember a whole lot from them separately, were done by Dr. Eric Wittkugel & Dr. Anne Lucky, both…
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 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,…
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…
By Lorraine Spaulding The following illustrations are an example of a hand wrapping technique found to be helpful in the protection and preservation of RDEB involved hands. The instructions are for very small hands and some adjustments probably need to be made for larger hands. Lorraine also have some suggestions if anyone is having trouble…
By Sheri Coil – with the assistance of Brandi & Alex The arms are all wrapped and the under-prep is done; the creams, ointments, lotions and potions are on, the non stick dressings are applied… and we are ready to start the torso. Picture of just arms done, bare torso We start with a 4″…
By Sheri Coil – with the assistance of Brandi The following is the way we wrap the hands (and arms while we are so near) to reduce the mittening deformity that RDEB causes. After cleansing and debriding I use a lot of Alwyn cream or what ever else I have used before it came along. …
