Wednesday, July 24, 2024

Epidermolysis Bullosa

Derek Kozar

Hi again!

Seems like I am always on here asking for advice on some weird disorders
(myotonia congenita a few weeks ago), and here I am back again.

Has anyone dealt with Epidermolysis Bullosa? Check it out here

http://www.debra.org/welcome.htm

Any friction on the skin causes blisters, and this poor 11 year old male
has blisters mainly on his lower extremity, with his right ankle being
the worst. The main problem here is that he has a 30 degree
plantarflexion contracture ( not sure why or how this developed),
subsequently he inverts the ankle with internal rotation. He has had a
contstant “blister” over his lateral malleolus for as long as Mom can
remember, and they are now trying skin grafting in this area. He needs
heel cord lengthening, but they will not do surgery for fear that his
skin will never heal!

His dermatologist has refered him, just looking for ideas. I definately
need to accomodate his PF contracture with a heel wedge on the shoe to
start. I guess my main question is, has anyone dealt with this, and if
so, what type of interface material have you used??? I would like to
stop the inversion, but any pressure here will surely cause skin
breakdown…I don’t know if anything can be done, but any ideas would be
appreciated.

Derek Kozar, M.Sc., C.O.(c)
Clinical Orthotic Consultants of Windsor, Inc.
Windsor, Ontario, Canada

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