Rare Diseases Symptoms Automatic Extraction
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A random Abstract
Our Project
Our Team
The psychosocial impact of chronic wounds on patients with severe epidermolysis bullosa.
[junctional epidermolysis bullosa]
To
explore
the
lived
experience
of
individuals
with
chronic
wounds
associated
with
dystrophic
and
junctional
epidermolysis
bullosa
(
EB
)
,
to
improve
understanding
and
,
therefore
,
enhance
the
care
provided
to
this
group
of
patients
by
acquiring
in
depth
data
on
the
psychosocial
issues
that
affect
them
.
A
phenomenological
study
using
interpretive
phenomenological
analysis
was
employed
.
A
purposive
sampling
method
was
used
with
six
individuals
replying
to
postal
invitation
to
participate
.
Following
one
-
to
-
one
interviews
,
six
superordinate
themes
were
identified
.
These
were
:
coping
,
pain
,
perceptions
,
emotional
impact
,
social
impact
and
support
network
,
each
with
subordinate
themes
.
All
of
the
superordinate
themes
have
been
identified
by
previous
research
into
chronic
wounds
,
burns
and
disfiguring
conditions
;
however
,
new
subordinate
themes
arose
.
This
study
highlighted
the
need
for
individuals
with
EB
to
have
a
multidisciplinary
approach
to
their
care
with
a
particular
need
for
pain
management
,
psychological
intervention
and
nursing
support
from
those
whom
clients
perceive
as
understanding
the
requirements
of
patients
with
EB
.
Further
research
into
identity
issues
in
individuals
with
EB
is
advocated
.
There
were
no
external
sources
of
funding
for
this
study
.
The
authors
have
no
conflicts
of
interest
to
declare
.
Diseases
Validation
Diseases presenting
"pain"
symptom
achondroplasia
acute rheumatic fever
adrenal incidentaloma
adrenomyeloneuropathy
aniridia
aromatase deficiency
carcinoma of the gallbladder
cholangiocarcinoma
coats disease
congenital diaphragmatic hernia
congenital toxoplasmosis
cushing syndrome
cutaneous mastocytosis
cystinuria
dedifferentiated liposarcoma
dentin dysplasia
dracunculiasis
dystrophic epidermolysis bullosa
epidermolysis bullosa simplex
erdheim-chester disease
erythropoietic protoporphyria
esophageal adenocarcinoma
esophageal carcinoma
esophageal squamous cell carcinoma
fabry disease
familial mediterranean fever
focal myositis
hirschsprung disease
hodgkin lymphoma, classical
holt-oram syndrome
junctional epidermolysis bullosa
kabuki syndrome
kindler syndrome
lamellar ichthyosis
liposarcoma
locked-in syndrome
lymphangioleiomyomatosis
malignant atrophic papulosis
neuralgic amyotrophy
oligodontia
oral submucous fibrosis
papillon-lefèvre syndrome
phenylketonuria
pleomorphic liposarcoma
primary hyperoxaluria type 1
proteus syndrome
pyomyositis
scrub typhus
sneddon syndrome
systemic capillary leak syndrome
thoracic outlet syndrome
trochlear dysplasia
typhoid
von hippel-lindau disease
waldenström macroglobulinemia
well-differentiated liposarcoma
wolf-hirschhorn syndrome
This symptom has already been validated