Emily Gorospe cannot sit still. The spunky 7-year-old with long, brown braids loves to make up dances in her bedroom. When she’s not dancing, she’s jumping rope, or hula hooping.
But last spring, when she was just six, Emily became very tired and sick. She developed a fever that wouldn’t go away and red blotches appeared across her body.
“She’s got so much energy usually. Just walking from one part of the house, from her room to the living room, or to the kitchen, she was drained.”
That’s Emily’s mother, Valerie Goropse, of Delano. She knew something was wrong with her daughter when she became extremely fatigued.
“It wasn’t like a sleepy tired. It was like ‘my body can’t handle simple things like walking.’ She just looked pale to us. She just didn’t look like our Emily, not just her actions, she just didn’t look like herself,” says Gorpose.
Emily was eventually diagnosed with valley fever, becoming one of an estimated 150,000 people nationwide stricken with the disease every year.
Valley fever is a fact of life in parts of California and Arizona. It starts with the simple act of breathing. Tiny fungal spores that live in the dirt enter the lungs. Everyone knows somebody who has had valley fever. And most have survived.
But in recent years, valley fever numbers have soared so high that health experts are calling it an epidemic. Yet even as cases of valley fever have increased, attention from policy makers, and research dollars, have not. In fact, just this summer, the small pool of funding for a potential vaccine dried up, leaving little hope of conquering the disease.
Dr. George Rutherford is a valley fever researcher at the University of California, San Francisco. He offered this explanation for why valley fever research has long gone overlooked and underfunded.
“Diseases that receive a lot of national attention, tend to be diseases that occur in the east, and where they read about it in the Washington Post everyday, or the CDC reads about it in the Atlanta Journal-Constitution, or they make the New York Times,” says Rutherford.
“Diseases that don’t exist in that belt really fall off the radar screen and unfortunately, valley fever is one of those diseases.”
But take a look at the numbers, and it appears that valley fever should prompt a more aggressive public health response.
For nearly two decades, statistics from the U.S. Centers for Disease Control and Prevention show valley fever doing more and more harm every year.
Between 2000 and 2009, the rate of valley fever more than quadrupled to thirteen cases for every 100,000 people. That means that people in states that report the disease to the CDC had a higher likelihood of catching valley fever than AIDS, hepatitis, or chickenpox.
Dr. Michael MacLean works in ground zero for this disease. He’s the health officer in rural Kings County, in California’s Central Valley. He has watched as cases of valley fever have climbed in counties throughout the state.
He doesn’t know if the increase is due to better reporting of cases, improved diagnosis of the disease, or environmental factors. But the important thing is that in the areas where the disease is prevalent, he says, “it will always be here, we’ll always have cases, and we should expect an ongoing burden of disease.”
Here are the basics: People who work outside – like farm workers and construction workers – are most likely to get it. The disease hits blacks and Filipinos harder than the rest of the population, and people with compromised immune systems and older people are more likely to suffer complications. Most people feel nothing, or experience symptoms similar to the flu or pneumonia.
In a small percent of cases, the fungus spreads beyond the lungs. This is called disseminated valley fever, and the effects can be devastating. Doctors compare the illness to tuberculosis because of its ability to damage so many distinct areas of the body. The fungus can enter the bones, skin and other organs, leading to brain swelling, lung failure, and, eventually, death.
“My daughter, she was 15, 14.5, when she got sick really bad. We didn’t know what was wrong with her," says Pascual Hernández. His daughter Jacalynn Faith Hernádez came down with fever, chills, and she became very weak. The valley fever fungus had spread through her blood stream, lungs, spine and brain. She died in 2008.
“It hurts to where you won’t be able to see her walk across the stage, to give her away to somebody in marriage, because this disease is so crazy and outrageously ugly to where it tears people up.”
Treatments usually include several rounds of antifungal medications and, at times, surgeries to remove infected bone or skin.
If it is caught early, physicians have a better chance of keeping the disease at bay. But doctors don’t often catch it early. Researchers say that most cases are misdiagnosed or missed entirely, in part because of a lack of training and attention in the medical community, in part because the symptoms are so varied.
“I think there are more cases out there than people realize. If you left some place on the coast in Southern California, drove up to Eureka, and stopped in Kings County, you may contract it here," says MacLean. But if you go to Eureka and you have community-acquired pneumonia, chances are they’re not going to diagnose you with valley fever.”
But many questions about the disease remain.
No one knows how much of the fungus needs to be breathed in to contract the disease. No one knows why some people die and others never know they are walking around with spores in their lungs.
With more research funding, some of those could be answered.
“I think everyone who is involved either in trying to prevent valley fever, or treat it better, or cure it... we don’t have the evidence we would like to have and the reason for that is there’s no funding for it,” says Dr. MacLean.
“If we can’t raise awareness about it and raise awareness of the significance of this illness, nothing will change.”
But the National Institutes of Health has neglected research funding on valley fever for decades.
Since 2000, the National Institutes of Health has directed nearly six hundred million dollars toward more than twelve hundred projects involving West Nile virus. Valley fever projects have received about four percent of that amount – just twenty-five million dollars over the past 12 years.
The impact on human health is nearly the reverse. Valley fever has stricken about four times more people than West Nile virus, with thousands more going undiagnosed. It has killed many more people, too.
“I think we worry a lot about the diseases that are spreading into the US, like dengue fever or chagas disease. Just because a disease occurs regionally rather than in all 50 states doesn’t mean it’s any less a target for disease control efforts,” says Dr. Rutherford.
More than a year after she was first diagnosed with valley fever, little Emily is feeling better. But the disease has left a spot on her lung, and changed the course of her young life.
At a town hall meeting on valley fever, held this fall in Bakersfield, Emily told state Senator Michael Rubio about her frustrations with valley fever.
“I don’t understand why valley fever picked me. For a long time, in the beginning, I was mad at valley fever for picking me,” said Gorospe.
She wore a ruffled pink dress and matching headband, and clutched a handwritten speech.
“The x-rays every month show me the spot is smaller. I want it to disappear so I can do the things I used to do and love to do.”
But while Emily’s health is improving, people throughout California and the southwestern United States continue to suffer from valley fever. And that won’t change until there’s more awareness of the disease and more research dollars.
This story was reported by the Reporting on Health Collaborative.