About
our
charity:
Pulmonary
Fibrosis
Foundation
The
Pulmonary
Fibrosis
Foundation
is a
non-profit
corporation
founded
in the
state of
Colorado
in 2000
by
Albert
Rose and
Michael
Rosenzweig,
Ph. D.,
both of
whom
were
diagnosed
with
Pulmonary
Fibrosis
(IPF).
Dr.
Marvin
Schwarz
was also
instrumental
in its
creation.
The
national
headquarters
is
located
at 1332
N.
Halsted
St.
suite
201,
Chicago,
Illinois
60622.
The
Foundation
is
dedicated
to
providing
the
leadership
and
resources
that
have
resulted
in
Increased
Research,
Improved
Health,
Early
and
Accurate
Detection,
and the
Inspiration
needed
to Find
a Cure
for
Pulmonary
Fibrosis.
What is
Pulmonary
Fibrosis?
Pulmonary
Fibrosis
involves
scarring
of the
lung.
Gradually,
the air
sacs of
the
lungs
become
replaced
by
fibrotic
tissue.
When the
scar
forms,
the
tissue
becomes
thicker
causing
an
irreversible
loss of
the
tissue’s
ability
to
transfer
oxygen
into the
bloodstream.
What are
the
symptoms?
-
Shortness of breath, particularly with exertion
-
Chronic dry, hacking cough
-
Fatigue and weakness
-
Discomfort in the chest
-
Loss of appetite
-
Rapid weight loss
What is
the
prevalence
of
Pulmonary
Fibrosis?
There
are five
million
people
worldwide
that are
affected
by this
disease.
In the
United
States
there
are over
200,000
patients
with
Pulmonary
Fibrosis.
As a
consequence
of
misdiagnosis
the
actual
numbers
may be
significantly
higher.
Of these
more
than
40,000
expire
annually.
This is
the same
as die
from
Breast
Cancer.
Typically,
patients
are in
their
forties
and
fifties
when
diagnosed.
However,
diagnoses
have
ranged
from age
seven to
the
eighties.
Current
research
indicates
that
many
infants
are
afflicted
by
Pediatric
Interstitial
Lung
Disease.
At this
time
there is
limited
data on
prevalence
for this
group.
What are
the
causes?
Traditional
theories
have
postulated
that it
might be
an
autoimmune
disorder,
or the
after
effects
of an
infection,
viral in
nature.
There is
a
growing
body of
evidence
which
points
to a
genetic
predisposition. A
mutation
in the
SP-C
protein
has been
found to
exist in
families
with a
history
of
Pulmonary
Fibrosis.
The most
current
thinking
is that
the
fibrotic
process is
a
reaction
to
microscopic
injury
to the
lung. While
the
exact
cause
remains
unknown,
associations
have
been
made
with the
following:
-
Inhaled environmental and occupational pollutants
-
Cigarette smoking
-
Diseases such as Scleroderma, Rheumatoid Arthritis, Lupus and Sarcoidosis
-
Certain medications
-
Therapeutic radiation
How is
it
treated?
There
are
currently
no
effective
treatments
or a
cure for
Pulmonary
Fibrosis.
The
pharmacological
agents
designed
to treat
lung
scarring
are
still in
the
experimental
phase
while
the
treatments
intended
to
suppress
inflammation
have
only
limited
success
in
reducing
the
fibrotic
progress.
Because
the
origin
and
development
of the
disease
is not
completely
understood,
misdiagnosis
is
common.
Varying
terminology
and lack
of
standard
diagnostic
criteria
have
complicated
the
gathering
of
accurate
statistics
about
people
with
pulmonary
fibrosis.
Supplemental
oxygen
improves
the
quality
of life
and
exercise
capacity.
Single
lung
transplant
may be
considered
for some
patients.
Pulmonary
Fibrosis
is a
very
complex
disease
and the
prediction
of
longevity
of
patients
after
diagnosis
vary
greatly. |
