Notes

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The Parathyroid Papers: Garry Shandling and a Little-Known Disease
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Readers discuss their experiences with and questions about the disease that may have hastened Garry Shandling’s death, and about which James Fallows discussed his own experience in “Garry Shandling and the Disease You Didn’t Know About.” Share your own thoughts via hello@theatlantic.com.

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From the Parathyroid Peeps site.

To round out some of the reader accounts and other reports collected in his thread, occasioned by Garry Shandling’s death, here without further setup are statements from some authorities.

1) The “Parathyroid Peeps.” Barbara Creamer, one of the founders of a patient-advocacy group called Parathyroid Peeps, writes:

We are 3 San Francisco Bay Area women who suffered from primary hyperparathyroid disease. We all had our surgeries performed at the Norman Parathyroid Center in Tampa, Florida - one of us in 2011 another in 2013 and the third most recently in 2014 to remove parathyroid tumors. The surgeries all took less than 21 minutes. You can read our stories here.  We didn't know one another prior to meeting in an on-line support group...

There were number of problems we personally experienced that contributed to a delay in diagnosis and surgical treatment. Though cured ourselves,  we felt compelled to educate others about the disease to move the larger conversation forward to create change. Thus our education and advocacy group Parathyroid Peeps came into being. You can read about our mission here….

What we’re talking about (Wikimedia)

This is part of a brand-new Thread, kicked off for this reason:

As I mentioned in yesterday’s Note, I’m not in a position to do follow-up reporting on a topic I mentioned after Garry Shandling’s death. That topic was the disease Shandling suffered from, hyperparathyroidism, and why it deserves more attention than it gets. Those posts also explained how my own experience with this disease had taught me that it was an exception to the “when in doubt, wait” strategy I generally apply before taking dramatic steps. The longer you wait before getting the operation that is the only known cure for this disease, the more damage it will do.

A lot of people have sent in their positive and negative reports. Notes maestro Chris Bodenner and I will host selections in this thread. You can reach him via hello@theatlantic.com.

“Don’t be bullied into waiting.” A reader in Los Angeles writes:

My sister and I have both had surgery (she twice) to remove a total of five tumors between us … thereby revealing the inaccuracy of the endocrinology community’s assertion that there is no genetic predisposition to the condition. (Our brother is currently suspect and being tested.)

I lost productive years of my life arguing with my [one major LA-area medical center] endocrinologist about whether my calcium levels were “high enough” to warrant action. Finally found a guy at [another center in the area] who believed me when I said I was suicidal from the symptoms. I absolutely would be dead if he hadn't listened to me, and will be forever grateful even though —

— one of my vocal cords was paralyzed while “spelunking” for the second tumor.  Sounds much like your experience with your wandering para; you were just a little luckier.  I lost my career because my speaking voice is now raspy and annoying, usually failing entirely by mid-day— but I would do it again.

Some of the joys of parathyroid disease (Nat’l Library of Medicine)

Yesterday, in the more formal, non-Notes precincts of the Atlantic’s site, I did a post occasioned by Garry Shandling’s death. It’s about the disorder Shandling said he had been diagnosed with, shortly before he died from a heart attack at the (relatively) young age of 66. The disorder is hyperparathyroidism, which I had never heard of before I learned I had the same condition ten years ago.

The reason for my post was to emphasize a lesson-of-experience I wish I’d known a decade ago, and that might help others now. The lesson is that “watchful waiting,” generally so wise an approach to life, is a mistake in this case. Once you’ve gotten indications that you have a parathyroid gland problem, mainly through a higher-than-normal calcium level in your blood, waiting is the wrong strategy. The odds are that you’re doing yourself real damage with every week you delay before having the bad parathyroid gland surgically removed.

Some details of how and why are in the main piece. (Including why it was a mistake for me to roam around in China for three years, as this condition got worse.) My point in telling the story was to spare others my predicament of (a) never having heard of a certain disorder, and thus (b) thinking, as I did, Aww, what’s the rush? on the question of surgery.

Here are two of the many reader accounts that have arrived overnight on this theme. First, from a woman in Alaska: