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The Mastocytosis Society survey on mast cell disorders: patient experiences and perceptions.
[cutaneous mastocytosis]
Mast
cell
diseases
include
mastocytosis
and
mast
cell
activation
syndromes
,
some
of
which
have
been
shown
to
involve
clonal
defects
in
mast
cells
that
result
in
abnormal
cellular
proliferation
or
activation
.
Numerous
clinical
studies
of
mastocytosis
have
been
published
,
but
no
population-based
comprehensive
surveys
of
patients
in
the
United
States
have
been
identified
.
Few
mast
cell
disease
specialty
centers
exist
in
the
United
States
,
and
awareness
of
these
mast
cell
disorders
is
limited
among
nonspecialists
.
Accordingly
,
information
concerning
the
experiences
of
the
overall
estimated
population
of
these
patients
has
been
lacking
.
To
identify
the
experiences
and
perceptions
of
patients
with
mastocytosis
,
mast
cell
activation
syndromes
,
and
related
disorders
,
The
Mastocytosis
Society
(
TMS
)
,
a
US
based
patient
advocacy
,
research
,
and
education
organization
,
conducted
a
survey
of
its
members
and
other
people
known
or
suspected
to
be
part
of
this
patient
population
.
A
Web-based
survey
was
publicized
through
clinics
that
treat
these
patients
and
through
TMS
's
newsletter
,
Web
site
,
and
online
blogs
.
Both
online
and
paper
copies
of
the
questionnaire
were
provided
,
together
with
required
statements
of
consent
.
The
first
results
are
presented
for
420
patients
.
These
results
include
demographics
,
diagnoses
,
symptoms
,
allergies
,
provoking
factors
of
mast
cell
symptoms
,
and
disease
impact
.
Patients
with
mastocytosis
and
mast
cell
activation
syndromes
have
provided
clinical
specialists
,
collaborators
,
and
other
patients
with
information
to
enable
them
to
explore
and
deepen
their
understanding
of
the
experiences
and
perceptions
of
people
coping
with
these
disorders
.
Diseases
Validation
Diseases presenting
"mast cell activation syndromes have provided clinical specialists"
symptom
cutaneous mastocytosis
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