Tag Archives: tips

Caregiver Poll Results

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Around 2004/2005 a poll was posted on this website to ask various questions such as where they get bandages, if they have help etcetera. Here are the results of that survey. The vast majority of people that have answered the survey stated that one of the parents is home full time and does all the…

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Helping Kids Cope

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CLICK HERE for the Spanish version Epidermolysis Bullosa, EB, is a very difficult condition to live with, even with the mildest forms. These are things of outmost importance in helping your child coping with EB:  Accept the EB and accept your child for who he is. This sounds simple, but it’s not. There is a…

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Hints From Grandma Shirley

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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…

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