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- $Unique_ID{BRK00222}
- $Pretitle{}
- $Title{What is EB?}
- $Subject{EB epidermolysis bullosa blisters Skin Subcutaneous Rare Diseases
- disease inherited children orphan Blister erupt eruption scar simplex nails
- mucous membranes Junctional tightening infection thinning killer GI
- gastrointestinal tract kidney bladder Dystrophic hands knees genetic grafts
- grafting graft kidneys hand knee child infections}
- $Volume{V-20, N-20, S-20}
- $Log{}
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- Copyright (c) 1991-92,1993 Tribune Media Services, Inc.
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- What is EB?
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- QUESTION: Doctors have two incredible habits, either they talk in words too
- long to understand or they are forever using just initials. Please translate
- for me. Just what is EB? A hint: it's a skin disease.
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-
- ANSWER: EB stands for epidermolysis bullosa, (which is too hard for even a
- doctor to say and so is abbreviated using the initials), an inherited skin
- disease affecting children. Because it occurs rarely, we call it an orphan
- disease--a disease that lacks a solid research basis with no cure in sight.
- Blisters occur constantly on the skin, erupt and then scar. The most gentle
- touch of a hand can cause the blisters. Kids with EB must be constantly
- protected from everything in the world. Just as we keep babies away from
- things that will hurt, everything can hurt the child with EB.
- It has its varieties: EB simplex occurs at birth, it is nonscarring, and
- may affect nails and mucous membranes. What is heartening in this form of the
- disease is that the patient improves with age. Junctional EB is more serious.
- It too occurs at birth with blistering, but also produces a tightening and
- thinning of the skin. In its severe forms it is a killer through infection or
- blistering of the GI tract, kidney, or bladder within the first two months of
- life. Dystrophic EB causes blistering in areas of the body where there is
- friction: hands, feet, knees. Each of these varieties has a recessive or
- dominant form, depending upon the genetic inheritance.
- As we said earlier, it is a disease without a cure and treatment methods
- are cloudy. Skin grafts as in burn victims have sometimes been helpful. Some
- pharmacologic approaches have been tried. Nursing therapy is at the core of
- EB treatment, involving the day-to-day decisions about just what can touch
- these kids' skin without further harm.
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-
- The material contained here is "FOR INFORMATION ONLY" and should not replace
- the counsel and advice of your personal physician. Promptly consulting your
- doctor is the best path to a quick and successful resolution of any medical
- problem.
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