Daisy Hernández

In this book Hernández has written a biography of her late Aunt Dora's life with Chagas disease, as well as a study of Chagas disease itself, especially in the US. While the disease--caused by a parasite spread by kissing bugs--is found in kissing bugs in the US, most cases in the US are among Central and South American migrants who most likely acquired it in their home countries where there are different species of kissing bugs. The parasite can cause no symptoms for 10-30+ years, and then its attack on (usually) the heart, or on the digestive system, becomes apparent. Some people are bitten many times and never develop symptoms. Mothers can pass the parasite on in utero, but drug treatments can cure children before the parasite gains a foothold in the body.

This book is fascinating and well organized--between sections about her tia she travels to Colombia (her mother and aunts' home country), California, Texas, and Virginia. She talks to researchers and doctors studying the disease, the bug, and working with patients. She goes kissing bug hunting. She talks to patients, and finds that often only one or two people in a family--even among siblings who grew up together--will develop the disease. It is very readable and informative, and I see why it has won a PEN award.

There were a few areas that I have questions about:
1. She advocates for adding a Chagas screen to the newborn test panel, as if in utero transmission is detected, the children can be fully treated. As the Latino population (especially the Central American and adjacent countries) population in the US has ballooned in the last few decades, there are more and more people in the US with the disease, and more babies potentially being born infected. She says this is due to racism--yet, at least in California, which has the most Chagas patients in the country, all newborn screens are for genetic disorders (sickle cell, cystic fibrosis, endocrine/immune/metabolic disorders). She does not mention this at all. Chagas can be passed, but it is not genetic. Does this difference change anything about how the screen is done? Does it require more blood? Different storage/testing system? She ignores all of this. It seems a targeted approach might be better--such as testing mothers before birth and then only testing the babies of positive mothers--and is there an ideal time after birth to run that test.

2. She briefly mentioned the possibility of climate change increasing the US range of parasite-carrying kissing bugs, but doesn't go anywhere with this. Is it being researched?

3. Does the significant number of shelter dogs infected mean anything for possible adopters? It seems any infected animal can pass the parasite back to a not-carrying kissing bug, who could then go on and infect other people/animals. Or am I misunderstanding?… (mere)