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…
Shirley, grandma and caregiver of Jennifer, an RDEB patient, shares her hints and tips and her knowledge about EB care with us. Constipation Hi all, I found this article in a pamphlet put out by dEBra International in their Nutrition section. Thought it might be helpful: Constipation in babies and young children is often the…
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. …
