Denise Duncan, who shared her story of living with sarcoidosis with the American Heart Association said her condition actually began with a diagnosis of congestive heart failure.

“I was diagnosed with sarcoidosis in my lungs in 2001 and was in bad shape and a bad stage.  I still get choked up thinking back.  I had close friends at a local funeral home who had heard about this sickness, and they did some checking along with the doctor.  I was told that sarcoidosis moves around and about three years ago it attacked my heart on the left bottom side. Anything this sickness touches, it hardens and can leave my heart and travel to another part of my body. My heart, however, is messed up forever,” Duncan said.

The exact cause of sarcoidosis is not known; however, it does appear in some families and may be linked to a genetic susceptibility.  Other research suggests that its prevalence among African Americans and Western Europeans (Scandinavian, German, and Irish) points to its origin as a mixture of genetic predisposition and environmental cues.

Because sarcoidosis can escape diagnosis or be mistaken for several other diseases, we can only guess at how many people are affected. Sarcoidosis mainly affects people between 20 to 40 years of age. White women are just as likely as White men to get sarcoidosis, but the African-American female gets sarcoidosis twice as often as African-American males.

A review of African-American sarcoidosis patients by the American Lung Association found that 90 percent had at least one other disease, including: high blood pressure or hypertension (39 percent), diabetes mellitus (19 percent), anemia (19 percent), asthma (15 percent), gastro-esophageal reflux disease, (15 percent), depression (13 percent) and heart failure (10 percent).

Cardiac sarcoidosis may also cause the heart to become enlarged, a condition known as cor pulmonale  that can lead to heart failure if left untreated. A complete heart blockage or a heart rate below 40 beats per minute, palpitation, irregular heart rhythm, and dizziness are some of the major symptoms, but many sarcoidosis patients with heart involvement are symptom free.

The prognosis for surviving sarcoidosis is primarily dependent upon the degree of lung and cardiac involvement, and the prognosis changes substantially in patients with symptomatic cardiac sarcoidosis. Cardiac involvement is the second leading cause of death and accounts for up to 25 percent of disease-associated mortality, due primarily to progressive heart failure.

Sarcoidosis affects about 135,000 Americans, occurring nearly 10 times as frequently in Blacks as in Whites.

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