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The experiences of young people with Epidermolysis Bullosa Simplex: a qualitative study.
[epidermolysis bullosa simplex]
The
objective
of
this
study
was
to
explore
the
experiences
of
young
people
with
Epidermolysis
Bullosa
Simplex
(
EBS
)
.
Eleven
participants
aged
10
-
14
years
were
interviewed
and
Interpretative
Phenomenological
Analysis
was
employed
.
A
key
theme
was
'
self
as
different
'
.
This
related
to
experiences
of
negative
treatment
and
exclusion
from
peers
;
a
lack
of
understanding
of
others
about
the
condition
;
and
a
sense
of
the
self
as
'
wrong
'
.
Findings
indicate
the
importance
of
providing
appropriate
psychological
and
peer
support
,
as
well
as
wider
community
education
and
intervention
,
as
part
of
the
holistic
treatment
of
young
people
with
this
chronic
,
painful
and
visible
skin
condition
.
Diseases
Validation
Diseases presenting
"lack of understanding"
symptom
epidermolysis bullosa simplex
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