Tag Archives: recessive dystrophic

Nicky’s Wound Pics Part 2

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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,…

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Fecal Hoarding and Constipation

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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…

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Nicky’s Wound Pics

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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…

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EB wounds offensive to Facebook?

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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…

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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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