Focus on getting well and surround yourself

with people that will help you do that. Maybe

get some new family and friends if yours arent
very supportive. Or at least consider it.
Sarcoidosis has no definitive cause and affects
everyone differently for different durations of
time. You may have it for 1-3 years or you may
have it forever. Its one of those hope for the
best but prepare for the worst situations, but
you are not alone.

Ready to connect with other people across the

globe with Sarcoidosis?

Sarcoidosis

www.inspire.com/groups/stop-sarcoidosis/

Where can you get help?

Inspire is an online support community that
brings together people from all over the world
with a dedicated forum for Sarcoidosis (please
see reverse for web link).
The community has (to date!) 16,000 members
and you can connect with people experiencing
the entire spectrum of severity in Sarcoidosis
from those that have experienced a short burst
of Sarc and then remission to those with severe
cardiac Sarc or chronic refractory (ridiculously
awful) Sarcoidosis.
On this free site you can speak with other
members about medical treatments, diet,
supplements, natural treatments, share fears
and successes overall you can connect with
a pretty great group of people that can really
help each other out.

So youve been given a diagnosis

that nobody has ever heard of.
www.sila.org.uk

www.inspire.com/plainTRUUS/journal/sarcoido
sis-overview/ for detailed information on Sarc
And if you are ready to
relate to and laugh at
what life can be like with
Sarcoidosis pick up this
funny and informative
book on Amazon or
Kindle.
Because life is just
better when youre
laughing with friends
who get it.

More intense info about Sarc and treatments is

available at www.tofumonkey.co.uk

Dont panic and stop Googling. We

can help each other through this.

So what is Sarcoidosis?

What is the typical treatment path?

Youve probably been told more about what

Sarcoidosis is not than what it actually is. In the
diagnosis stage of Sarc conditions like Cancer,
Lupus and Sjogrens are often tossed around
this is because Sarcoidosis mimics so many
other conditions. As such it is a diagnosis of
exclusion. (not usually quick!)

Not all Sarc requires treatment if you can

avoid it most people would recommend trying to
do so. In some cases the side effects can seem
just as bad as the disease. However, some
forms of Sarc can be unbearable or even fatal
without treatment work with your doctor on
the route that is best for you.

A biopsy with other testing is a common way of

diagnosing Sarcoidosis (but only to 99%
accuracy, so buy a lotto ticket too).

Typical treatment for Sarc follows this route,

increasing or changing to medications along the
list as per the severity of your disease:
Hydroxychloroquine
Prednisone/prednisolone (steroids)
Methotrexate
Azathioprine
Mycophenolate Mofetil
Adalimumab
Remicade / Inflixamab
Cyclophosphamide or IVIG
Dried platypus testicle elixir taken only
on a full moon on a Tuesday.

Sarcoidosis is an inflammatory condition that

can affect virtually any organ in your body
youve got a hyperactive and paranoid immune
system that cant really tell the difference
between healthy tissue and non, so it just goes
a bit wild causing damage through granulomas
and scarring. Lung involvement is not a must in
Sarcoidosis. There is no cure (yet!) so
treatment is symptom management.
Common issues are feeling completely and
utterly exhausted, short of breath, flu-like with
aching joints and bones, swollen limbs, crazy
fevers and night sweats, among others.
No, youve not suddenly gotten old and no
youre not a hypochondriac! You dont have to
live like this.

High dose corticosteroids (not the sexy beach

kind) (15mg/day+) for a long time (6 months+)
can cause Cushings Syndrome an attractive
condition of extreme weight gain in your face,
shoulders and middle. (Its just temporary)
Greatbetter fat than dead though, right?

What can you expect?

You will most likely be under the care of a
number of specialists, such as:
Your GP / Family doctor
A pulmonologist (lungs)
A Rheumatologist (joints, bones,
sweats)
An Opthalmologist (eyes)
A Neurologist (brain)
Phlebotomist (you will be giving A LOT
of blood samples. Always be nice to
your phlebotomist they get stabby
when theyre angry!)
It is important for you to advocate for yourself.
Keep all of your letters from different specialists
in a single file or USB stick and cart them
around with you you wont regret being the
centre of your own information and knowledge
of your Sarcoidosis. Arm yourself with
information!
Its not easy being invisible
You have an invisible disease, which is
sometimes made harder by being able to feel
your symptoms but nobody (including you) can
actually see them. You may not get the support
and understanding that you need from family
and friends and sometimes even yourself.
Recognize that you are sick and dont push
yourself too hard.