Mercies in Disguise: A Story of Hope, a Family’s Genetic Destiny, and the Science That Rescued Them by Gina Kolata
My rating: 5 of 5 stars
If there was a strong possibility that you carried a defective gene that causes a disease that leads to an early painful and prolonged decline and ultimately an untimely death, would you want to know? If you have the gene, it’s not a matter of if the disease strikes you, but when. So, which path do you choose? It’s not an easy question, even hypothetically, but that is the very real situation in which Amanda Baxley finds herself at the beginning of Gina Kolata’s moving tale of a family’s battle to stop a killer gene in its tracks.
Mercies in Disguise takes readers on a journey to New Guinea where tribes were struck down by a mysterious disease known only as kuru. From there, readers follow the path scientists took to discover what is known today as the “prion,” the culprit behind Mad Cow Disease, Chronic Wasting Disease, and Scrapie. Kolata also looks at the speculative future of prion disorders, thinking about how that might play into Alzheimer’s research going forward.
While the science is an important aspect to this book, the human element is by far the most interesting. The Baxley family has been struck down, one by one, over several generations by a mysterious and debilitating disease. Sometimes diagnosed as Alzheimer’s, sometimes diagnosed as Parkinson’s, and sometimes diagnosed as Alzheimer’s complicated by Parkinson’s the Baxley’s are in need of answers before the disease claims another victim. In a family of doctors, they begin to experiment on themselves. Finally, a genetic link is found leaving the next generation, that of Amanda and her siblings, to decide what to do with their knowledge while simultaneously watching their father die after losing their uncles to the same terrifying disease.
Gina Kolata balances the science and the human extremely well. There is enough science and technical jargon for someone in the medical field but she also breaks down the medical facts in a way that is approachable for the casual reader. Kolata primarily follows Amanda’s struggle which allows the reader to really develop a personal connection with the family. From the very first line, this book drew me in and refused to let me go until the final word. Certainly a must read!