Sarcoidosis has often been referred to as the 'snowflake' disease, by myself and others, because patients may have so many different symptoms and most have multiple organ involvement which may include the lungs, eyes, spinal cord, liver, lymph, brain, heart, spleen, CNS and/or others.
While snowflakes are also complex and variable with no two being alike, that is where the analogy ends. Sarcoidosis is nothing like a beautiful snowflake. At its best Sarcoidosis patients do well with little or no treatment and about half the time it goes away on its own. At its worst the first symptom may be sudden death.
New imaging techniques (e.g. advanced cMRI and PET) show prevalence and mortality may be much higher than previously thought. There is still no marker specific to Sarcoidosis leaving diagnosis to be statistical likelihood based on a process of elimination, frequently requiring biopsy of the involved organ. For those with chronic Sarcoidosis treatment is limited to quality of life improvements as no cause or cure is yet known.
The University of Minnesota, recognized as a WASOG (World Association for Sarcoidosis and Other Granulomatous Diseases) Sarcoidosis Clinic is doing important research to identify a Sarcoidosis marker(s) to aid the diagnosis, treatment, prognosis and perhaps even a cure.
Your support of this research is needed for patients and their families in the fight against this disease.