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Living
with any type of chronic health condition (in my
case sarcoidosis)
will alter every aspect of your daily life.
It will also affect every aspect of those
around you.
Learning to cope with your condition on a
daily basis is a difficult task, but a task that
can be achieved.
Sarcoidosis
is best described (based on what I’ve been
told) as a multi-system autoimmune and systemic
disease.
Sarcoidosis can attack any organ in your
body, including the eyes and skin.
The disease spreads from organ to organ,
causing damage to any organ it comes in contact
with.
Sarcoidosis also can attack anyone
regardless of race, sex, age, living or work
environments, financial status, political
affiliation, sense of humor or any other factor
you can come up with...sarcoidosis truly shows
no prejudice!
It is important to understand that each
case is unique based on which organs are
affected.
But in the same tone they are all
similar, especially in regards to the mental
aspect of living with a mysterious disease such
as sarcoidosis.
Sarcoidosis
currently has no known source of origin and
there are no standard tests ran to specifically
detect sarcoidosis, causing some patients to go
a long period of time being misdiagnosed
resulting in permanent secondary chronic health
conditions and at times premature death.
It is usually found after other tests
have failed.
Currently there is no legal definition
for sarcoidosis or legal category, which results
in patients legally and routinely being denied
Social Security and private insurance disability
benefits, insurance policies and employment
opportunities.
Last but not least, there is no cure for
sarcoidosis!
On a positive note, awareness regarding
sarcoidosis is on the rise.
As more patients are being diagnosed with
the disease and national organizations are
working to make their elected officials aware of
the need for legal legislation and resolutions,
along with continued research, some progress is
being made...but nowhere near enough!
We need results along with more help and
understanding for those currently suffering from
the disease and even more importantly for the
patients of the future.
I
can’t say when I first started to show signs
of sarcoidosis or when I actually developed the
disease in the first stages.
Around ninth grade (1973) I developed bad
sinus problems.
When outside cutting the grass or during
the season when a yellow dust (pollen from the
pine trees where I grew up in Northern Florida)
filled the air, I would produce constant wet
mucus from my nose.
As I heard throughout my life, it was
just bad sinus problems and there was nothing
that could be done.
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