Epidermolysis Bullosa Info & Awareness
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 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. …
By Sheri Coil A bit of History Shortly after Christmas one year, we received a phone call asking us if we were interested in caring for two little boys with a very rare disease that affected their skin. We are caregivers to medically fragile children and like to care for those with ‘challenging’ conditions. The…
By Grammy Shirley December 23, 2002 This is information regarding Jennifer Deprizio’s many hand surgeries. Before Jennifer came to live with me in 1997, she had been through many hand surgeries to open the digits and to keep her hands from mittening. Jennifer’s hand before surgery None of them worked and the reason for this…
by Silvia Corradin My story on how I came to care for my son started, as with all RDEB babies, when he was born. Since he was c-section he came out perfect except for some problem with his mouth. The nurses sucked all his skin out of his mouth when they did the routine suctioning…
