Story about Sarcoidosis .

Sarcoidosis - I can't even spell that.

Jan 22, 2016


I was diagnosed in 2009 after nearly 20 years of being plagued by vague, yet persistent symptoms.  Every doctor I consulted could find nothing wrong with me....meaning nothing ever showed up on blood work.  My numbers were always good.  Because of this I was labled as "depressed" and recommended for counseling or anti-depressants.  I knew I wasn't depressed but I couldn't figure out what was wrong with me.  Finally, when I became so ill that I was afraid to close my eyes at night, for fear I wouldn't wake up, I was seen by a doctor who thought my heart was in distress.  When the x-rays came back, they thought I had Lymphoma...and that it was pretty far advanced.  The Radiologist who did the CT suggested Sarcoidosis as a second option of a diagnosis.  A biopsy was performed and the non-caseating granulomas were discovered, giving me a diagnosis of Sarcoidosis.  The biopsy was done of my lungs first.  Over the next few years, I had other specialist visits and biopsies were performed confirming that my Sarcoidosis is systemic.....meaning it affects multiple organs.  Skin, liver, lungs, eyes, sinuses, lymphnodes, muscles, joints, and heart.

I have educated myself on this disease and feel fairly confident that while I may not know all of the technical medical terms, I do know this disease and what it does to us.  My goal is to bring more awareness and to educate.  I will be happy to help anyone with Sarcoidosis that I can.

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