My physician’s index finger slid across the X-ray, briefly stopping in areas to indicate the foreign presence in my lungs. I had pulmonary sarcoidosis. And for the next 14 years, I would have regular examinations for my pulmonary health without ever knowing that my heart could be at risk, too.
I was first screened for cardiac sarcoidosis in 2016, after a possible aortic valve mass was discovered during an exercise stress echocardiography. But upon further examination, no evidence of it was found.
I moved on, not realizing that my heart should remain on my radar as part of my sarcoidosis care. I was alerted to this need by comments from readers of my column.
The clusters of inflammatory cells I stared at on those radiology images many years ago occur in the lungs of about 90% of us who have this disease. My mind was too busy galloping though the “what ifs” to worry about the granulomas being anywhere else.
What if they don’t go away? What if they spread? What if they cause extensive damage? You get the idea.
Because we head off to pulmonologists focused on preserving our breaths, the possibility of cardiac involvement may never come up. That’s why this February, I’m revisiting the topic again as part of American Heart Month.
It’s hard to pinpoint just how prevalent cardiac sarcoidosis is. In a column last year, I mentioned a study that estimates that anywhere from 3.7% to 54.9% of those with systemic sarcoidosis are affected.
What is clear, however, is that it is life-threatening and often not found until after people die. Nearly two-thirds of deaths related to cardiac sarcoidosis were caused by undiagnosed granulomas in the heart, according to the study “Sudden death in cardiac sarcoidosis: an analysis of nationwide clinical and cause-of-death registries,” published in the European Heart Journal in 2019.
One reason the condition, which is on the rise, has been going undiagnosed is because of the lack of clear guidelines for doing so. New guidelines recently established in Japan are yielding better results.
I believe another cause is lack of awareness. To change that, it’s important that we share our knowledge and experience, and provide a road map for others to reduce their risk of going undetected.
One of the challenges with having a rare disease is finding physicians who are familiar with treating it. Sometimes, much like our medical teams, we have no idea that there is a threat we are missing.
This month, please help me spread the word about this one.
Brighter side: We all could use a break from bad news right now. So, I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear.
- A winning ticket: The cheapest ticket to Super Bowl LV, featuring the Tampa Bay Buccaneers and the Kansas City Chiefs, was nearly $10,000 as of last week, according to The Kansas City Star. But to honor those on the frontline of the pandemic, 7,500 vaccinated healthcare workers will get a free seat to the 22,000-person capacity game on Feb. 7.
- Chatty pets: Have you ever wondered what your pets are trying to tell you? If so, there’s technology to help. A new dog collar from Petpuls can analyze barks to determine if your dog is happy, relaxed, anxious, angry, or sad, CBS 2 Chicago reported. It retails for $99. If it’s meows you want to decipher, the app MeowTalk can help you better understand your feline.
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, and are intended to spark discussion about issues pertaining to sarcoidosis.
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