c.2026, The Belknap Press of Harvard University Press
$29.95
338 pages
Four weeks of testing, and you’re exhausted.
Two gallons of blood, maybe three, have been removed, no lie. You’ve laid on tables, slid through machines, been scanned so much you lost count and finally, your doctors have a diagnosis. As in the new book “Curved Air” by Kevin Davies, you have hope there’s a what next?
Though the disease was known in parts of Africa and likely existed here in the United States for hundreds of years, sickle cell disease (SCD) is a relative newcomer in disease research. Says Davies, “Sickle cell was first identified more than 120 years ago” and it was considered as a “Black disease.” Because of that, discrimination followed “sickle cell warriors” and research was scant, though white people can and do get SCD.
With “agonizing” pain as a major symptom, “SCD is one of roughly seven thousand genetic diseases” currently known to science. When someone has SCD, a genetic mutation causes their red blood cells to curve and get stuck in blood vessels, rather than flowing freely as blood cells are supposed to do. This diminishes the oxygen supply “to various parts of the body … which causes inflammation and pain,” jaundice, stroke, and damaged organs. Anemia, Davies says, can leave a patient with fatigue and shortness of breath. Anticipating pain crises causes anxiety and PTSD.
Says Davies, “More than 40 million people carry” one copy of the genetic mutation that causes SCD, and “500,000 affected” babies are born with the disease per year, worldwide.
Over decades, research was done, haphazardly. Papers were written, treatments were tried, used, or discarded. Doctors discovered that genetic testing could prevent new cases, a heartbreak for would-be parents. Researchers discovered that “a perfect storm” of confluence spread SCD: malaria, human population, and mosquitoes.
There was always hope that someday, sickle cell disease might be cured.
And then CRISPR gene editing therapy was approved by the FDA, and a brave volunteer named Victoria Gray stepped forward …
So you want to — need to — learn more about sickle cell disease. It’s imperative for you, and this is your book but there are things you’ll want to know before you dive into “Curved Air.”
Because author Kevin Davies is the editor of The CRISPR Journal, you can expect up-to-date, cutting-edge information but that’s a two-sided coin: the information is heavy-duty, not always easily grasped, and it’s burdened by acronyms that are easily overwhelming. Yes, that’ll inform you, but it may also send you elsewhere for further understanding, which really should’ve come from this book.
And yet, if you or someone you love has SCD, this is your book. It explains where the disease came from, why it hasn’t been completely cured yet, and what kind of hope you can hold. It’s a good start on a path to comprehension.
Also be aware that the narrative here is sometimes padded with journalistic fluff that might annoy you, if you’re eager to get to the science. Indeed, “Curved Air” will teach you. Then again, it also might test you.
