Tags: Featured Story, Health, Infant & Baby, Parenting, Safety
Ashley Villegas, age 22, speaks with the authority of someone much older. The past four years of her life have been atypical. They've been mixed with traditional milestones, like finishing high school and entering college, along with the unusual circumstance of working through treatment for a chronic life-threatening illness as a new parent.
Ashley has Valley Fever, a mysterious but lesser known disease on the rise in California. Her condition was not diagnosed until her third trimester of pregnancy.
"What I wish people better understood is that Valley Fever is a serious illness; it's no joke. You can get Valley Fever just by breathing, so there's not really any way to prevent it," said Ashley. "Valley Fever can happen to anyone."
The illness in the dust
The infection, which has been labeled "the illness in the dust," is caused by a fungus called Coccidioides, according the Centers for Disease Control and Prevention (CDC). When soil is disturbed, spores are breathed in and a person can become ill. Contagion does not take place from person to person contact. The illness starts with direct exposure to air-borne spores that live in dirt, which makes it more common in agricultural and construction workers as well as after earthquakes.
The CDC lists individuals with lower immunity, such as children, the elderly, and pregnant women, as those most likely to contract Valley Fever. More than 14,000 cases across California, Arizona, Nevada, New Mexico, and Utah were reported in 2017, the most recent year for which the CDC has available data. Cases peaked in 2011, according to government statistics, with 22,641 infections reported in those regions. There were more than 5,000 new Valley Fever patients in 2016, the year Ashley contracted the illness.
Ashley's epidemiology team suspected that playing varsity soccer outdoors led to her exposure. Symptoms can be mild, especially in otherwise healthy adults, and passed off as routine, often first mistaken for a cold, the flu or another, less threatening infection. Headache, sore throat, muscular pain and malaise are what patients first notice, and they may actually have the disease without knowing because severity of symptoms does not progress. Most people who are exposed to the spores do not get sick.
"I noticed I had a sore throat, but I didn't really think anything of it at first. I went to the doctor when my fever peaked and got antibiotics, but they didn't seem to do anything," said Ashley, who was then 18. "I began to have hoarseness and couldn't talk, but I had no idea what was wrong."
Unexplained illness, motherhood, and intensive treatment
Ashley again sought care and was told she had a urinary tract infection, a common occurrence in late pregnancy. She took antibiotics as prescribed and tried over-the-counter remedies like acetaminophen to ease her symptoms.
"I wasn't getting better for any real length of time. It was just went on and on," Ashley recalled.
After two months of unexplained fevers and antibiotics that had seemingly no effect, Ashley's mother, Martha, knew something was seriously wrong and that the symptoms she was seeing were not simply the end stage discomfort of pregnancy or a simple illness. Her daughter was hallucinating and her fevers had peaked at 104 without breaking for days. She drove Ashley from their home in Tehachapi to Kern Medical in Bakersfield, where doctors confirmed Ashley had secondary meningitis, along with Valley Fever, which had spread from her vocal cords to her eyes, brain and bones.
Seizures and swelling in Ashley's brain required swift intervention, but existing treatments for Valley Fever could cause birth defects in a developing fetus. Two days after being admitted to Kern Medical, Ashley was induced at 32 weeks pregnant and her daughter, Kayleen, was born.
"My daughter was tiny, just 4 pounds, 13 ounces, and she spent a month in the neonatal intensive care unit even though my placenta protected her from getting Valley Fever. She didn't have the same illness I had, but she still had to be in the hospital for a long time," Ashley explained.
The family's life changed instantly
"I was not in the right state of mind. It sounds crazy, but I can't even really remember that time or what I was thinking. When I would see Kayleen at the hospital, I was not really conscious of who she was or even who I was. All of a sudden, my mom had me to care for me, a grown woman who had lost all ability to care for herself in even the most basic ways, and a newborn baby," said Ashley.
Intensive treatment for Ashley began immediately after Kayleen's birth. Kern Medical is the only hospital in the region that can offer the kind of intervention severely ill patients like Ashley need, which included a shunt in her head to reduce brain swelling and a port so medication could reach her brain and spinal cord. She was in and out of the hospital for months and received treatment five days a week for more than a year.
"I couldn't walk for 10 months. My mom had to shower me in a chair. I had three or four months of physical therapy to learn to walk again," said Ashley. "I had no idea what my quality of life would be like again during that time and if I would ever really go back to how I was in high school- healthy and happy. I lost a lot of myself to the illness."
Life with Valley Fever
Ashley's health has improved overall but there is no cure for Valley Fever. She continues to receive treatment and takes medication daily. She only had one ultrasound during her pregnancy but the experience inspired her to study ultrasound sonography at High Desert Medical College.
As part of her course of study to become an ultrasound tech, Ashley is currently participating in an externship at Kern Medical. She had multiple ultrasounds for gallstones after her baby's birth in the same department where she now works alongside the medical professionals her helped her.
Ashley and Kayleen were both born at Kern Medical, and their connection with the facility will continue throughout the Valley Fever treatment process. The medical facility is home to the Valley Fever Institute, which specializes in related research as well as patient care. It's the only facility of its kind in our state's Central Valley area.
Quality of life looks different for Ashley now. She credits her mom for helping save her life and Kern Medical for delivering her treatment as well as the joy of her life, her daughter, who is now healthy at age 3.
"My daughter is my motivation right now. I'm trying to do everything I would do in my normal life, but I am exhausted and I struggle to do what I did before getting sick. Everything I do to move forward now is because of Kayleen," she said.
Advocating for awareness
Ashley helps educate the public about Valley Fever and raise awareness when possible. She attended a fundraising announcement and check presentation at Kern Medical on July 23 as a member of the audience who knows all too well how the disease affects patients, and put a face to the earmarked appropriations dedicated to making advancement possible. State funds in the amount of $2 million were awarded to further the Valley Fever Institute's work within Kern County and for its research purposes, with the potential to impact scientific understanding of the disease overall and how to better treat it.
"We were unaware of what Valley Fever even was until the doctor explained it to my mom and me, because I was dying of it. The disease is more deadly than people know. That needs to change," said Ashley.
Funding, increased medical research and survivors like Ashley are sure to help make change possible.