Author Archives: admin

Guidelines for parents

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Guidelines for parents on the play and development of the child with Epidermolysis Bullosa  This is the transcript of a little booklet distributed by DEBRA UK by Joyce Stebbings Thank you Brenda for typing this for us!  INTRODUCTION As parents with a child who has just been diagnosed, as having Epidermolysis Bullosa it is difficult at…

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A Different Kind of Perfect: Writings by Parents on Raising a Child with Special Needs (Paperback)

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A Different Kind of Perfect: Writings by Parents on Raising a Child with Special Needs (Paperback) by Cindy Dowling (Author) From Publishers Weekly While all parents worry about their offspring, parents of children with special needs face a unique set of challenges that is served well by this touching collection. The conflicting emotions and frustrating…

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Diet for Epidermolysis Bullosa

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Diet for Epidermolysis Bullosa For children over 1 year This is the transcript of a little booklet distributed by DEBRA UK called “Diet for Epidermolysis Bullosa”. Thank you Brenda for typing this for us! 🙂 Nutrition in Epidermolysis Bullosa Children with the more severe forms of EB have problems consuming an adequate food intake. This is…

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Nutrition for Babies with Dystrophic EB

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BY: Lesley Haynes SRD The latest version of this booklet is available in PDF format at the Debra International website. You can download it HERE. Webmaster note: Although this was written specifically for Dystrophic EB by Registered Dietitian Lesley, it has been pointed out to me that it is helpful for babies and toddlers of…

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Living with Epidermolysis Bullosa

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For more information or to Order the book, simply click on the title. Living with Epidermolysis Bullosa (Paperback) Compiled by Silvia Corradin, edited by Brenda G. Living with Epidermolysis Bullosa has first-hand accounts written by parents and patients who are living or have lived with EB, and was compiled to help people in general understand how…

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EB and Dental Health

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By Tim Wright, D.D.S., M.S. Department of Pediatric Dentistry Thank you Brenda for typing this for us! 🙂          Individuals with EB may have teeth with severely malformed enamel (enamel hypoplasia) and/or dental caries depending on the EB type. The enamel is usually normal in simplex and dystrophic EB types. Generalized enamel hypoplasia is typically limited…

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EB and the Eyes

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This is the transcript of a helpful book from DebRA U.S. in regards to EB and how it effects the eyes. Thank you Brenda for taking the time to type this up for us!!! —- Problems with the eyes can occur in most forms of Epidermolysis Bullosa (EB).  The eyelids, conjunctiva and the cornea may…

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Physical Therapy

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I put this page together with the aid of a little booklet distributed by DEBRA UK called “A guideline to physiotherapy for parents of Children with Dystrophic Epidermolysis Bullosa”. As the booklet states, this page is most useful for parents who have a child with Recessive Dystrophic Epidermolysis Bullosa. The importance of movement Most people…

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Basic 101 Care

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This page was put together with the aid of a little booklet distributed by DEBRA UK called “Care and Management of Children with Dystrophic Epidermolysis Bullosa”. Because of the rarity of EB, many parents have not been helped by the medical community, and hospitals have even injured these children by applying tape, bracelets, sucking the…

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For New Parents

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For New Parents I put together this page with the aid of a leaflet distributed by DEBRA UK called “Dystrophic Epidermolysis Bullosa Initial Information for Parents”. The leaflet this information is taken from is specific about caring for newborns of the “Dystrophic” form of Epidermolysis Bullosa, however, most of the information is valid for the…

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