This past weekend’s WSJ had an interesting article for me by Joe M. Moore titled “I Was in Great Health. So Why Were My Arteries Clogged?”
Joe M. Moore’s essay recounts his unexpected diagnosis of Sitosterolemia, a rare genetic disorder causing arterial plaque buildup, despite a healthy lifestyle. His high calcium score, revealed by a cardiac CT scan, initially baffled doctors. After further testing, Sitosterolemia was identified, highlighting the challenges of rare disease diagnosis and the importance of patient advocacy. Moore emphasizes proactive screenings and persistent questioning to ensure accurate diagnoses. The essay also discusses the high rate of misdiagnosis in the US and advocates for increased patient involvement in healthcare decisions.
So what you may ask. You may recall that while undergoing a dermatology procedure to remove skin cancer from my left temple the physician commented that he had never seen a temporal artery with such a large amount of calcification as mine. I fed this info to my cardiologist and received nothing back. Nada, Zip. This article provides insight into plausible steps to take to ascertain if Sitosterolemia is the case, and indeed, what degree of calcification I display.
As a side note, thanks to the persistence of my wife, I am now scheduled for a heart procedure/look-see on 12/30/2024. I have to go to Ft Worth on 12/26/2024 to see the attending nephrologist since my local kidney doctor does not have privileges there. We have been advised to take our cycler and associated gear in case we have to stay overnight. An overnight stay is in order if I have stents installed. One day at a time sweet Jesus.
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