Just One Breath: Share your valley fever story
The first stories in the Reporting on Health Collaborative’s series on valley fever, called "Just One Breath," ran this weekend in the Bakersfield Californian, the Merced Sun-Star, the Stockton Record, the Voice of OC, and KVPR. They will run in Vida en el Valle, in Spanish, on Wednesday.
Valley fever is often regarded as a fact of life in Central California. But the first stories in the ‘Just One Breath’ series reveal that even as the disease reaches epidemic proportions, the disease and its impact remain hidden, due to widespread misdiagnosis, a lack of research funding, and a history of neglect by state and federal policymakers.
Behind those cases of valley fever are people whose lives have been forever changed by the disease. Each individual story is uniquely devastating, but there are some common themes: People suffer as their range of symptoms confound doctors. Their school and professional work, and their passions and lives, suffer due to their illness. They express frustration that, even in highly endemic parts of the state, there is little understanding of the disease.
These stories are best told in people’s own voices. And the series has already featured some moving personal stories:
Emily Gorospe, 7, was too sick and tired to dance – let alone walk through the halls of her family’s Delano home – when she first contracted Valley Fever. She’s now lived with the disease for more than a year, and has developed coping skills for her many doctors’ visits.
Despite her bravery, Emily has struggled with having a serious illness at such a young age. Her constant refrain for the past year has been: “I hate valley fever. Why did it have to pick me?
Todd Schaefer was diagnosed with spinal fungal meningitis in the fall of 2003. But heavy antifungal drugs with harsh side effects, coupled with other health complications, have made his condition hell, he said.
Schaefer and his wife, Tammy, own an award-winning winery, Pacific Coast Vineyards. But during an early August interview, Schaefer said he had worked just two days in the past six months. “I need to get an exorcist,” he said. “I am possessed. I hate it. I’m so sick of it. Get it out of me!”
We want to hear your experience with valley fever, too.
One way to raise awareness of valley fever among the public, the medical community, and policy makers is to put a compelling, human face on this disease.
If you or a loved one has had an experience with valley fever, please share your story. You can reach me at rplevin(at)vidaenelvalle.com or @HarvestHealth on Twitter.
A version of this blog was originally posted on Harvesting Health.