What is Sarcoidosis
(pronounced SAR-COY-DOE-SIS)
Sarcoidosis is an inflammatory disease
characterized by the formation
of granulomas—tiny clumps of inflammatory
cells—in one or more
organs of the body. When the immune
system goes into overdrive and
too many of these clumps form, they
can interfere with an organ’s structure
and function. When left unchecked,
chronic inflammation can
lead to fibrosis, which is the permanent
scarring of organ tissue. This
disorder affects the lungs in approximately
90% of cases, but it can affect
almost any organ in the body. Despite
increasing advances in research,
sarcoidosis remains difficult to diagnose
with limited treatment options
and no known cure.
Disease presentation and severity
varies widely among patients. In
some cases, the disease goes away on
its own. In others, the disease may
not progress clinically but individuals
will still suffer from some symptoms
that challenge their quality of
life. The rest of patients—up to a
third of people diagnosed with the
disease—will require long-term treatment.
Sarcoidosis is considered
chronic in people whose disease remains
active for more than 2-5 years;
in this population sarcoidosis can be
debilitating and life-threatening.
best advocate. You know
your body better that anyone
else. If a doctor doesn't want
to listen to you then he
shouldn't be your doctor.
I also preach a couple of
things to all sarcoidosis patients.
First, they call it the
snowflake disease for a reason,
no two snowflakes are
the exact same and the same
for sarcoidosis patients. We
may have sarcoidosis in the
same organs but don't have
the same symptoms. One last
thing, if you get some other
cold or sickness it is not always
due to sarcoidosis. Sicknesses
or diseases happen and
may not have anything in
common.
First things first sarcoidosis
has made me a better person.
I know that sounds crazy for
me to say even after being
downgraded from chronically
ill to terminally ill. So, you
must be thinking how am I a
better person? Easy, I relate
better to people, have more
empathy towards other people
who are sick. It has also made
me stronger, maybe not physically
but definitely mentally.
Don't get me wrong, I go
through bouts of depression
and anxiety. In 2015, I even
contemplated suicide. I was
so close I actually went to the
hospital and put myself in a
72-hour watch. I know now I
wouldn't commit suicide. You
see I learned something after
that. I had two choices in life.
One was to ball up in a corner
and let it win or stay strong
and fight with all I have. I
chose to fight. My motto is "I
have sarcoidosis but it doesn't
have me!"
In the past two years about
100 sarcoidosis patients that I
know have died. Out of those
100, about 30 of them committed
suicide, mainly due to
pain, no support and no outlook
of a cure. So, with that
Sarcoidosis of Long Island
has a new mantra "You Are
Not Alone!" I will leave this
interview on that note.
Frank Rivera is the President
of Sarcoidosis of Long Island.
You can read more about
Frank on his blog, lifeasararepatient.
blog. More on
the Sarcoidosis of Long Island
at, sarcoidosisofli.org.
(Connued from page 23)
Internaonal Pain Foundaon—25
/sarcoidosisofli.org