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DISPELLING THE MYTHS
Jacqueline Denyer, the Specialist Nurse for children with EB answers
some common questions about EB Simplex.
Q. Should children with EB
Simplex attend a specialist centre?
A: Although there is yet no product to stop
the blisters from forming, being able to talk openly to a doctor with
knowledge of such problems and who will believe the history must be of
enormous benefit to some families. Advice can be given regarding footwear
and friction relieving products as well as information on mobility,
benefits and allowances.
Q. "Do all types of
EB have the same dressings?"
A. Dressings used for the Dystrophic and
Junctional forms of EB are generally highly unsuitable for those with EB
Simplex as they tend to be bulky and therefore generate a lot of heat.
For example, those with the Dowling Meara form of EB Simplex should try to
use a minimal amount of light dressings and only dress actual wounds,
rather than blistered areas.
Many people prefer to avoid dressings wherever possible.
Q: Are EB Simplex blisters
painful?
A. Yes!
Advice can be given regarding pain relief after careful consultation to
find the correct drug to suit the individual life-style.
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