Epidermolysis Bullosa Info & Awareness
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,…
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…
Apparently the daily life of my son is offensive to Facebook and whoever ‘reported’ this photo to Facebook as a violation of the statement of rights and responsabilities. Huh? No, this photo isn’t pretty. That’s the point of posting it, isn’t it? To SHOW what EB is really like. To show the suffering EB patients endure. We’ve…
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 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. …
Through the years of running this website I’ve been asked questions about Epidermolysis Bullosa that follow in the category of misconceptions. People believing some things regarding this condition that are false. This is not only from strangers, friends and family, but from the medical community, as well as actual EB patients and parents. I’ve asked…
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…
Bathing Bathing can be a good way to cleanse wounds because you can add different things to the bath water. Some patients bathe while others shower or do a combination of both. These are some of the things people use in their baths to help with infections: Aveeno Oatmeal bath – Aveeno Daily Moisturizing Bath with natural…
