Just One Breath: Tackling a Disease Before Treatment Even Starts
In health writing, we put a lot of focus on prevention, and we put a lot of focus on treatment. When we write about diagnosis, though, it’s usually as part of a story about new technology aimed at screening more people for cancer or some other disease.
We don’t write enough about what happens when someone is not diagnosed with a disease or when someone is given the wrong diagnosis.
As part of the Reporting on Health Collaborative, Yesenia Amaro and Tracy Wood took on the misdiagnosis of valley fever. As I have written about before, we are writing about valley fever because it affects so many people in the Southwest and yet it has a very low profile nationally.
Amaro and Wood initially wrote a piece that talked about both diagnosis and treatment, but it quickly became apparent that the problems with diagnosis alone were worth more attention. Here are some tips from their great reporting for the piece that ran this weekend.
Tell a human story without the melodrama. The first sentence of their story hooks you because it introduces the problems of misdiagnosis of valley fever by introducing you to a little girl who has suffered the effects of doctors getting the call wrong.
Jayden Lugo has had 56 surgeries in her short life.
The 10-year-old from Wasco in California’s Central Valley has brain damage, uses a walker to get around, undergoes therapy once a week and takes three pills every night before she goes to bed.
Jayden was born healthy, but when she was 2-months-old she contracted valley fever or coccidioidomycosis, becoming one of an estimated 150,000 adults and children who annually contract the disease prevalent in California and Arizona. What happened next illustrates the impact the disease can have when valley fever is not diagnosed early enough.
But notice something about the tone. Amaro and Wood aren’t trying to draw tears. You’ll never see the words "tragic," "ordeal," or even "sad." They are trying to inform, and throughout the story, they return to Lugo and her family to underscore some of the key findings of their reporting, not to dramatize.
Explain the patient’s role in health care decisions. Often health stories are written as if everything that happens to patients occurs by forces completely out of their control. Doctors, nurses, and hospitals are the power structure, and the patient is powerless.
There’s no doubt that patients don’t have the power that they often should. But they have an important role to play. If they don’t enter the doctor’s office or the emergency room with good information about their health status, then bad information can snowball into a bad diagnosis. Then there is the broader question of what public awareness should look like. Here’s how Amaro and Wood explained it:
When Jayden Lugo came down with flu-like symptoms, the state was in the middle of a spike in valley fever cases unlike anything seen in a decade. In 2000, there were 860 people officially diagnosed with the disease statewide, but by 2002, the number had more than doubled to 1,727.
But state and federal public health officials did not issue any warnings about the disease. The rise in cases wasn’t even mentioned in the news media, according to media databases. Jayden’s parents say they had heard of valley fever when doctors finally diagnosed their daughter with the disease, but they didn’t know much about it.
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