Tuesday, February 26, 2013

JFK's adrenals

If I can live as well with Addison’s disease as John F. Kennedy did, then I have no worries. I was told by my endocrinologist last week that the adrenal insufficiency crisis that I experienced a month ago probably knocked out my adrenal glands for good, meaning I’ll remain on steroid replacement for the rest of my life. I was under the impression that I’d gradually taper off steroids, but that now appears unlikely. I need them to live.

The prednisone I’m on aims to replicate the necessary amounts of the missing hormones—cortisol and aldosterone—that my adrenals are no longer producing. It will take some focused attention to maintain the right dosage, but like most people with Addison’s, the disease shouldn’t interfere drastically with my lifestyle. Fatigue and dizziness are the most common concerns of so-called Addisonians. Steroid meds, on the other hand, tend to fire me up, so perhaps I’ll strike some sort of reasonable balance in terms of my energy level.

I appear to have ipi to thank for this loss of adrenal function. The silver lining is that this represents my body's robust immune response to the extra antibodies loosed by my ipi infusions; it hints that I’m a responder to the high-risk immunotherapy regimen I signed up for last fall. If that proves true, it makes the penalty of being diagnosed with Addison’s easier to swallow. Until steroid meds became available in the 1950s, AD inevitably resulted in death over a period of time.

JFK’s Addison’s disease, which came to light only after his election in 1960, was most likely caused by a rare autoimmune disease called APS2. In contrast to the full medical disclosure that’s typical today, Kennedy’s family and advisors were able to keep his medical history virtually secret. Nobody knew about his AD until years later. JFK, at 43 the youngest president ever elected, was portrayed as healthy and vibrant. In reality, he suffered various health issues that were controlled by a daily regimen of steroids and other drugs. I’m getting to know what that’s all about.

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