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Junctional epidermolysis bullosa incidence and survival: 5-year experience of the Dystrophic Epidermolysis Bullosa Research Association of America (DebRA) nurse educator, 2007 to 2011.
[dystrophic epidermolysis bullosa]
Junctional
epidermolysis
bullosa
(
JEB
)
is
a
particularly
devastating
type
of
epidermolysis
bullosa
,
especially
in
the
newborn
period
.
Data
about
the
number
of
new
cases
of
JEB
in
the
United
States
were
collected
from
the
records
of
the
Dystrophic
Epidermolysis
Bullosa
Research
Association
of
America
(
DebRA
)
nurse
educator
.
Seventy
-
one
children
with
JEB
were
reported
to
have
been
born
in
the
5
years
between
2007
and
2011
,
reflecting
an
incidence
of
at
least
3
.
59
per
million
per
year
,
significantly
higher
than
previously
estimated
(
2
.
04
per
million
)
.
There
was
a
high
prevalence
of
morbidity
and
infant
mortality
of
at
least
73
%
,
as
52
of
the
71
cases
proved
fatal
by
June
2012
.
These
data
emphasize
the
need
for
future
research
to
develop
treatment
and
ultimately
a
cure
for
this
disorder
.
Diseases
Validation
Diseases presenting
"high prevalence"
symptom
22q11.2 deletion syndrome
acute rheumatic fever
adrenal incidentaloma
allergic bronchopulmonary aspergillosis
alpha-thalassemia
cholangiocarcinoma
classical phenylketonuria
congenital adrenal hyperplasia
congenital toxoplasmosis
cowden syndrome
cutaneous mastocytosis
cystinuria
dracunculiasis
dystrophic epidermolysis bullosa
erdheim-chester disease
erythropoietic protoporphyria
fabry disease
familial hypocalciuric hypercalcemia
familial mediterranean fever
gm1 gangliosidosis
heparin-induced thrombocytopenia
homocystinuria without methylmalonic aciduria
junctional epidermolysis bullosa
kabuki syndrome
legionellosis
lymphangioleiomyomatosis
neuralgic amyotrophy
oculocutaneous albinism
oligodontia
oral submucous fibrosis
papillon-lefèvre syndrome
pendred syndrome
phenylketonuria
primary hyperoxaluria type 1
pyomyositis
scrub typhus
sneddon syndrome
trochlear dysplasia
waldenström macroglobulinemia
wiskott-aldrich syndrome
zellweger syndrome
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