When I was diagnosed with sarcoidosis, my physicians drilled into me the importance of annual lung and eye exams. And I have followed through every year without fail. But numerous readers have made me aware of another important area of concern: the heart. February is American Heart Month and a reminder to make an evaluation for cardiac sarcoidosis a priority as my readers have urged.
A silent threat
My sarcoidosis was confirmed by bronchoscopy in 2003. But 2016 was the first time I underwent any kind of testing for cardiac sarcoidosis, and that was a fluke. I had been diagnosed with postural orthostatic tachycardia syndrome, and a potential aortic valve mass was spotted during an exercise stress echocardiogram. An MRI, a second echocardiogram, and an EKG followed and no evidence of cardiac sarcoidosis was found.
I didn’t give it another thought until last year when readers of my column shared stories of the devastating sudden loss of loved ones from cardiac sarcoidosis. Their loved ones’ cardiac sarcoidosis went undiagnosed until after their deaths, which is often the case. A 2016 study found cardiac involvement to be the most common cause of sarcoidosis-related death in those examined postmortem.
Not as rare as believed
Cardiac sarcoidosis cases doubled between 2005 and 2011, according to a study that led researchers to conclude the disease may not be as rare as once thought. Cardiac sarcoidosis is only diagnosed in about 5 percent of those with sarcoidosis. But it is detected in up to 25 percent of those with systemic sarcoidosis upon autopsy or by using advancing imaging techniques.
That indicates that the rate of occurrence is far higher than previously reported. A study published in the Cardiology Journal in 2018 estimated that 3.7 percent to 54.9 percent of those with systemic sarcoidosis are affected by the condition.
Beginning the conversation
Cardiac sarcoidosis goes largely undiagnosed because there are no clear diagnostic guidelines. The Cleveland Clinic called it one of four types of sarcoidosis to watch and said the long-term prognosis is good if it is detected early.
My conversation with physicians about cardiac sarcoidosis ended when no evidence was detected in 2016. I never asked whether additional testing was recommended, how often I should be evaluated, or how to minimize my risk. But thanks to readers, those are questions I will be addressing when I return to the Cleveland Clinic in a couple of months.
If you haven’t already done so, I strongly urge you to discuss cardiac sarcoidosis with your physicians.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.