“Curved Air: A Biography of Sickle Cell Anemia and the Quest to Cure the First Molecular Disease” by Kevin Davies
c.2026, The Belknap Press of Harvard University Press $29.95 338 pages
Four weeks of testing, and you are exhausted.
Two gallons of blood, maybe three, have been drawn from your body. You have lain on tables, gone through the bore of diagnostic imaging machines, and been scanned so often that you have lost count. Then, finally, your doctors identify your medical problem.
In the new book, “Curved Air,” author Kevin Davies examines what happens when the diagnosis is sickle cell disease, also called SCD, and what hope lies ahead.
Though SCD was known in parts of Africa and likely existed in the United States for hundreds of years, the genetic blood disorder was first identified more than a century ago, says Davies. It is one of about 7,000 known genetic diseases, and a relative newcomer to disease research.
Considered a “Black disease,” sickle cell — and the agonizing pain it causes — was never prioritized by the medical research community and discrimination often derailed “sickle cell warriors,” healthcare providers, researchers and advocates trying to combat the disease. But white people also can and do get SCD.
Still, disease-specific research remains scant.
When someone is diagnosed with SCD, a genetic mutation causes their red blood cells to curve and get stuck in blood vessels, rather than flow freely as blood cells are supposed to do. This diminishes the oxygen supply to parts of the body, causing a variety of conditions including inflammation, pain, jaundice, stroke and damaged organs, Davies says, while anemia can cause chronic fatigue and shortness of breath. And the anticipation of pain crises causes anxiety and post-traumatic stress disorder for many SCD patients.
Says Davies, more than 40 million people carry one copy of the genetic mutation that causes SCD, and 500,000 babies worldwide are born with the disease every year.
In past decades, research has been conducted haphazardly. The confluence of malaria, human population and mosquitoes in some parts of the world helps spread the disease. Papers have been written, and treatments have been tried, used and discarded. Then researchers discovered that genetic testing could prevent new cases, a heartbreak for would-be parents faced with the decision to terminate a pregnancy.
But some never gave up hope that sickle cell disease might someday be cured.
Then a brave volunteer named Victoria Gray, a Black woman who had suffered debilitating pain from SCD, stepped forward in 2019 to become the first person ever to receive CRISPR-based gene-editing therapy after it was approved by the FDA.
According to the National Institutes of Health, CRISPR is an acronym for Clustered Regularly Interspaced Short Palindromic Repeats, a technology that allows scientists to change DNA in living beings to treat genetic disorders, blood diseases and infectious conditions.
We should all learn about SCD, and this is your book for the lesson. Before you dive into “Curved Air,” however, know that Davies is the editor of The CRISPR Journal, so you can expect the latest information on the technology. But the information is heavy-laden with details and terms not easily grasped and burdened by acronyms that can be overwhelming. Informative, yes, but the book may also send you elsewhere looking for clarity, which really should also come from the same text.
And yet, if you or someone you love has SCD, this is still your book. It explains the origins of the disease, why a cure has not been found and what kind of hope you can hold. Though the narrative is sometimes padded with journalistic fluff that might annoy readers eager to get to the science, it is a good start on the path to understanding.
Indeed, “Curved Air” will teach you. Then again, it also might test you.
