SPOILER ALERT: If you haven’t read Nekhet, at least partway through, the following post contains (mild) spoilers. So here’s a safe Internet alternative for you if you’ve not yet read the book.
It’s good to know that my readership has faith in my book research; what I write, apparently, rings true for you, and that’s a high compliment to an author. But in one particular case, I’ve perhaps merited maybe a bit too much credibility. My email account has blown up over the past few days with an influx of – sorry, I’m going to paint these with a broad brush – semi-hysterical emails from readers asking some variant of the following question: “My kid had whooping cough! Are you trying to tell me s/he is at risk for narcolepsy?”
Well, everyone’s at risk for everything, at one statistical confidence level or another. I’m at some vanishingly small, but mathematically demonstrable, risk of having a coyote drop an anvil on me when I leave the house. But the short answer is probably not. I definitely did not mean to yell FIRE in a crowded theater in writing Taryn Spencer; she’s a fictional character who suffers from a rare disease – that’s all. I wrote Reswyt from the perspective of someone who was sleep-deprived, because I’ve personally lived through that hell, and in this book, I felt strongly drawn to explore the opposite end of the spectrum – the deep end of the pool, as it were. And I was very surprised at (a) how little is known about the causation of narcolepsy; (b) how little can be done for it; and (c) how frighteningly common its trigger agents are.
Note that I’m terming them trigger agents, and not causative agents. I quote the University of Maryland Medical Library:
“Narcolepsy is associated with a specific type of human leukocyte antigen (HLA). HLAs are genetically determined proteins on the surface of white blood cells. They are a part of the body’s immune (defense) system. The finding of a very high HLA-association in narcolepsy led to the proposal that narcolepsy is an autoimmune disease, similar to other HLA-associated diseases such as multiple sclerosis and ankylosing spondylitis. It is theorized that an autoimmune reaction causes the loss of nerve cells in the brain in patients with narcolepsy. The environment (for example, infection or trauma) might trigger an autoimmune reaction where normal brain cells are attacked by the body’s own immune system.”
There’s an underlying condition in narcolepsy sufferers, in other words, that awaits a trigger factor; it’s not that whooping cough caused Taryn’s narcolepsy, it’s that she harbors an HLA-associated autoimmune condition just waiting to be set off by a stressor. Pertussis – whooping cough – is a known factor in HLA-related conditions like narcolepsy both because of its effects on hypocretin, the peptide that governs sleep activity in the brain, and because it is a physical stressor – disrupting the normal sleep cycle and weakening the body’s ability to manage its immune response.
The testing involved for narcolepsy also isn’t nearly as outlandishly costly as it’s painted as in the book. Most decent healthcare insurance would almost certainly cover it – but Taryn’s mom is an uninsured seasonal housekeeper in Dugway, UT, and from their little family’s perspective, the testing facility might as well be located on Neptune for how easy they’re going to find to get into it. If you’re concerned – and clearly some of you are! – go get tested. Drop me a line and let me know everything’s OK. I’ll feel better after having read all of this correspondence. And give yourselves a collective pat on the back for being good, watchful moms!