Sarcoidosis Research & Education Blog

News from the Sarcoidosis Research & Education Foundation

Sarcoidosis: The Snowflake Disease

Sarcoidosis is often referred to as the 'snowflake' disease because patients may have so many different symptoms. Diagnosis is challenging and can be made even more difficult by intermittent inflammation in multiple organs. Nearly half of the Sarcoid Research and Education Foundation survey respondents indicated diagnosis took over 5 years. The respondents had an average of almost 3 organs involved. This included sufferers of Sarcoid of many types affecting the lungs, eyes, spinal cord, liver, lymph, brain, spleen, and other organs.  

As there is no marker specific to Sarcoidosis diagnosis remains a statistical likelihood based on a process of elimination frequently requiring biopsy of the involved organ. The diagnosis challenge is illustrated by one survey respondent who had been misdiagnosed as having MS for many years but has now been diagnosed as having neurosarcoidosis.

The University of Minnesota 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 this fight against this disease.