Category Archives: Hints & Tips

Every EB patient is different… no, really!

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When my son was born and later diagnosed with Recessive Dystrophic EB I thought the only difference with him and the other patients was the degree of severity. Actually, I take that back. I did not know there was a degree of severity either, I thought that, like most diagnoses I had known in the…

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How to find Individual State Programs

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These programs help low-income families (usually) or/and children with special needs. When you click on the link for YOUR State’s Department of Public Health, search for (if it’s not immediately evident) ‘Children Health’ or ‘Children Medical’ services. If the NAME of the State Program and information it is known, that information will be below the…

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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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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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Dealing with Insurance Companies

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By Melanie (Logan) England (this information formerly on the EBmommas website) Ignorance is not bliss. 90% of Epidermolysis Bullosa related claim denials from insurance companies are due to ignorance of this rare disease. As if you did not have enough to do, it is now your job to educate them on EB. People who have…

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Helpful Words for New Parents

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Taken and adapted for EB from the Down Syndrome for relatives page website I cannot stress enough how important it is for family to support the new parents at this time. This is a frightening time for the new parents and they often wonder how their family will treat the new baby. Showing how much…

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Plane Trip Tips: Flying with EB kids

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By Sheri Coil Reservations: When making your reservations, explain about your situation and EB and ask to reserve the bulkhead seats where there is more room. Pre or Early Boarding: Most all airlines provide for early boarding for the elderly, babies and the handicapped, but not all do this automatically. With some airlines you have to…

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