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Neurofibromatosis type 1: persisting misidentification of the "elephant man" disease.
[proteus syndrome]
during
informal
interviews
in
the
course
of
an
ethnographic
study
on
intergenerational
dialogue
between
individuals
with
neurofibromatosis
and
their
parents
,
many
members
of
Canadian
neurofibromatosis
associations
have
stated
that
they
continue
to
be
told
the
condition
that
afflicts
them
or
their
children
is
"
elephant
man
's
disease
.
"
Today
,
even
though
well-established
clinical
criteria
make
it
possible
to
diagnose
and
differentiate
the
2
diseases
,
the
confusion
between
neurofibromatosis
type
1
(
NF
1
)
and
elephant
man
's
disease
persists
in
both
the
media
's
and
physicians
'
representations
.
this
was
an
ethnographic
study
in
medical
anthropology
.
some
reference
sources
and
print
and
online
news
media
have
all
contributed
to
the
persistence
of
the
association
between
NF
1
and
elephant
man
's
disease
.
Our
observations
suggest
that
confusing
NF
1
with
the
Elephant
Man
's
condition
harms
the
interests
of
those
with
NF
1
and
thus
increases
the
burden
of
the
disease
.
changes
of
attitude
regarding
medical
teaching
and
the
media
could
dispel
the
confusion
among
physicians
and
journalists
.
Diseases
Validation
Diseases presenting
"well-established clinical criteria"
symptom
proteus syndrome
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