Epidermolysis Bullosa Info & Awareness
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…
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 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. …
I put this page together with the aid of a little booklet distributed by DEBRA UK called “A guideline to physiotherapy for parents of Children with Dystrophic Epidermolysis Bullosa”. As the booklet states, this page is most useful for parents who have a child with Recessive Dystrophic Epidermolysis Bullosa. The importance of movement Most people…
