If you are biracial (Caucasian and Mexican/Latino) you could help save Camila de la Llata’s life.
Camila, 22, was about to return to California State University, Fullerton, for her senior year when she was diagnosed with acute leukemia in August. Today, she urgently needs a bone marrow transplant.
“A doctor cannot save Camila’s life, a donor can,” said Camila’s mother, Robin de la Llata, who is from Porterville.
But the search for a donor is tough. Across the country, just three percent of the 9 million people registered as donors are of Latino heritage; just four percent are biracial.
Bone marrow transplants are based on genetics, and at least nine out of 10 of a donor’s genetic markers must line up with Camila’s, said Robin de la Llata. She compared the difficulty of locating a match to finding a needle in the haystack.
Doctors are concerned that a match won’t be found in time to save Camila’s life, so the family has put out a call to action: They are urging biracial people to register immediately for the national bone marrow donor program, Be the Match, which has established a special drive on Camila’s behalf.
Biracial people between the ages of 18 and 44 years old should visit Camila’s Cure to register to be a potential donor for Camila.
“If she doesn’t find the donor, her chances of survival are severely reduced,” Robin de la Llata said.
Camila is pictured above with her father, Gabriel de la Llata, and her mother, Robin de la Llata.
This week’s edition of Vida features the stories of two Latinas – Jamie Ledezma, of Fresno, and Jennifer Solorio, of Sacramento – who were diagnosed with breast cancer before they’d had children or celebrated their 35th birthdays.
They are among an estimated 13,000 women under age 40 diagnosed with breast cancer every year.
There is less research on, and less awareness of, breast cancer among young women, but that doesn’t mean it’s less of a threat. In fact, young women with breast cancer have a lower five-year survival rate (84 percent) than those diagnosed at 40 years of age or older (90 percent,) according to the American Cancer Society.
But as you’ll hear from Ledezma and Solorio, young women can survive – and thrive – after breast cancer.
When she was diagnosed: In Feb. 2007, when she was 27 years old and 14 weeks pregnant
Her reaction to the diagnosis: “”I was aware that I would probably be touched with cancer, statistically, at some point in my life. But I always imagined that it would be in my golden years; I always imagined that after I had a career and raised my children and was doting on my grandchildren, I would probably be touched by cancer.”
Her guiding philosophy during treatment: “If every doctor told me they were going to do everything possible to make sure I’d have a healthy baby, then I was going to do everything possible to make sure I had a happy baby. I had control over how we were going to react, and I was going to be grateful that we were pregnant, I was going to be grateful that we were given a chance to save both of our lives, that medicine had advanced as far as it had.”
A new perspective: “I’m grateful that because of cancer, I’m trying not to live a life full of regrets, so I won’t get to that rocking chair and wonder why I didn’t try this, or take this leap of faith, or give more, or love more or help more.”
When she was diagnosed: March 2010, when she was 32 years old
Her reaction to the diagnosis: “I’m 32 years old — I’m young, I’m single, I have this whole life ahead of me that I want to live, and these hopes and dreams. I want to have kids — who knows if I’ll ever be able to have children.”
Support during treatment: “I automatically felt like everyone was pulling for me, and there was no way I could fall down.”
A new perspective: “They say don’t sweat the small stuff – I really don’t. I try not to stress and worry anymore. I have no room in my life for that anymore. I laugh more, I’m more relaxed and laid back now.”
A message for other women: “Breast cancer doesn’t discriminate – it can happen to anybody. I just really encourage Latina women to know their bodies and be their own health advocates. If you are diagnosed with breast cancer, it can be a traumatic experience, it is a life-changing diagnosis. But if caught early, you can get through it.”
Earlier this fall, the New York Times’ lead food writer Mark Bittman visited the San Joaquín Valley. In a recent piece for the Times’ magazine, ‘Everyone Eats There,’ Bittman said he came here to explore big farming, small farming, food politics and sustainability – as well as the industry’s impact on natural resources, people, and animals.
During his five-day visit, Bittman experienced the environmental conditions that many of us endure here. He writes:
The air, trapped between mountain ranges, stinks, and the pollution is consistently ranked among the most severe in the country. Worse, there are so many cows nearby in megadairies and feedlots that the air contains microscopic particles of dried dung, enough so that you can taste it. I smelled it on my clothes when I unpacked each night and even brought it home with me. I have never carried Visine in my life, but there I was using it every half-hour.
After visiting huge farming operations and an organic farm, and meeting a Hmong farmer, Bittman lands on this issue:
There must be, I thought (or fantasized) as I traveled through the valley, some movement toward pushing farmers, big and small, to produce decent food sustainably. Because if there’s not, the valley’s problems will only worsen, and we’d be complicit in destroying one of the country’s greatest resources, one that has served us amazingly well until now.
Well, I have an answer for Bittman: There IS a movement pushing for better, more sustainable environmental conditions in the San Joaquín Valley, and it’s bubbling up from the people who are most impacted by these problems.
Yesterday, I participated in an environmental justice bus tour, as part of the launch of the new Fresno Environmental Reporting Network. The network allows residents to report health and environmental hazards in their community, via telephone, text message, e-mail, or the website, www.FresnoReport.org.
During the tour, we visited a farm labor camp in Huron, where residents have to leave their small, cream-colored buildings to use the bathroom or shower. Just down the road, we visited another apartment complex, located next to a “stinky stream,” that turns brownish-red during the tomato harvest. Resident Leonarda Soto told us that when her grandchildren come in contact with the water, they break out in rashes across their bodies.
In Lanare, an unincorporated community surrounded by dairies and chicken farms, we heard about the community’s ongoing struggle for clean drinking water. The community has a water treatment plant, to deal with the high levels of arsenic in the water, but residents can’t afford to operate it, resident Isabel Solorio told us.
With the Fresno Environmental Reporting Network, residents like Soto and Solorio can now report these problems and violations, and get a response from government officials. A task force of community members and government officials will meet monthly to follow up on the concerns and ensure the reports are addressed.
Tracey Brieger, co-director of Californians for Pesticide Reform, said this network represents a movement toward realistically quantifying cumulative health impacts in the Valley, or all the unhealthy elements to which residents are exposed.
“When a farmworker is exposed to pesticides, they’re not exposed to just one, they’re exposed to dozens – on top of smog, on top of water contamination, on top of particulate matter, so it’s not just one thing,” she said. “The way you think about these things, and the way you regulate all of this pollution, isn’t the way a community member in a real human body experiences it.”
The new network, she said, will empower community members to report health and environmental hazards to government agencies, and ensure their concerns are addressed. The model, she said, represents a new trend in government accountability and transparency, when it comes to health and the environment.
“I think this is going to be the cutting edge issue: How to get regulators and government agencies to start regulating in a way that represents communities’ lived experiences,” Brieger said.
“We’re far from that, but as with so many of these issues, it’s directly affected people who are taking the lead – it is community members, it is farmworkers, it is all the people who experience it saying, ‘Hey, you need to look at this differently.’”
Environmental reporting, previously on Harvesting Health:
I rephrased the question: “How many of you know someone who has had valley fever?”
Hands shot up around the room.
Their response underscored an underlying theme of the Reporting investigative series: Valley residents have largely accepted valley fever as a fact of life. Everyone knows somebody who has had valley fever – most have survived.
The pictures below, by Vida photographer Daniel Cásarez, begin to illustrate the widespread impact this disease has had on Valley residents.
After I finished my presentation, Domitilia Lemus, of Plainview, above, shared her connection to valley fever with the group: A relative, she said, died at age 21 of valley fever, leaving behind two children.
Later, I invited group members to write their connections to valley fever on a white board. Esther Martínez, of Alpaugh, above, scribbled: “I know six people with valley fever, but they don’t want anyone to know they have this disease. I hope they find a cure.”
More residents shared their connections to valley fever with me – and you. Their photos and stories – written in their own hand writing – are below.
Josie, of Seville
Becky, of Seville
Erasto, of Porterville
If you’re community group would like to learn more about valley fever, or if you’re interested in sharing your struggle with valley fever, e-mail us at email@example.com, or call (661)748-3142 and leave a message.
Or, write your experience on a white board, and e-mail us the picture.
The bill, sponsored by Assemblyman Mike Eng, makes it state policy that every person has access to safe, clean and affordable drinking water. The law requires state agencies — like the Department of Water Resources, the State Water Resources Control Board, and the Department of Public Health — to consider this position when making a water policy decision.
On Monday night, during the monthly meeting of the Community Water Center’s community group AGUA, residents who can’t drink their tap water and their allies recalled their efforts to support and pass the bill.
Residents and their advocates spent several years traveling to Sacramento and sharing their struggles for clean water with legislators, they said. They offered the legislators plastic bottles of their communities’ drinking water and dared people to sample the ‘San Joaquín Valley Kool-Aid,’ they said, laughing.
They recalled that their lack of access to clean, affordable drinking water made international news in March 2011, when the United Nation’s Independent Expert on the Human Right to Water and Sanitation visited the tiny Tulare County community of Seville.
The bill’s passage, they agreed, was cause for celebration. So, a mariachi band played everyone’s favorite songs. Chairs were cleared away so people could dance. There was so much food and cake.
Vida photographer Daniel Cásarez’s photos capture the joy and camaraderie of the evening.
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.
But 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.
On Tuesday morning, our reporting on the disease will be featured on Valley Public Radio’s ‘Valley Edition’ program at 9 a.m. Kirt Emery, health assessment and epidemiology program manager for the Kern County Public Health Services Department, and Dr. John N. Galgiani, director of the Valley Fever Center for Excellence, will also join the discussion.
We hope you will call in to share your story, and help put a human face on this disease. The studio line is 800-224-8989.
This week, there has been a lot of buzz on the Internet about the law, schools’ new menus and child nutrition. Here is a peak at two regional organizations that are focusing on nutrition in schools and communities.
In a recent editorial, the young people at The kNOw said they are hopeful that they can help reverse the childhood obesity epidemic in the region and nationwide.
One reason we’re so hopeful: Our culture is in favor of healthy weight in children. No one says, “I’m ok with obese kids.” People universally agree that healthy weight in kids is important. Unlike reducing youth violence, working on obesity in kids doesn’t call for a change of culture. It requires a change of what’s available and what’s easiest. Kids will be healthy if it’s an easy option.
How are you and your family bringing a fresh focus to child nutrition?
The walk is an opportunity for people to learn more about the symptoms of Valley Fever, also known as coccidioidomycosis. People contract the disease by breathing in fungus spores that are endemic to Central California, as well as parts of Arizona and New México.
The walk is also a chance for people with the disease, and those who lost loved ones or pets to it, to connect and find support.
And it’s an opportunity for people to record their personal experiences with Valley Fever.
I will be joining Louis Amestoy of The Bakersfield Californian at the event to collect people’s stories in video, words, and photos. The stories will help put a compelling, human face on a disease that many people think is “a myth or a joke,” according to Sandra Larson, executive director of the Valley Fever Américas Foundation.
The project is an initiative of the Health Journalism Fellowships at the University of Southern California’s Annenberg School for Communications and Journalism. It is made possible with the support of The California Endowment.
If you will be attending tomorrow’s walk, please visit us and share your story. If you can’t make it to the walk, but would like to share your experience with Valley Fever, leave me a note in the comments section below, or contact me at firstname.lastname@example.org.
On Monday and Tuesday mornings, more than 200 workers from Gargiulo, Inc. participated in a labor strike along Manning Avenue in rural Mendota.
By the time I arrived to the field site around 8 a.m. yesterday, the San Joaquín Valley was already beginning to bake. The workers wore their typical field clothing: long pants, long shirts, hats, and bandanas covering their heads and mouths. But instead of picking tomatoes, the workers waved the United Farm Workers’ red flag as cars and trucks zoomed down the road, as they had done since about 4 a.m.
The workers decided to strike, “to demand better working conditions, better treatment and, most importantly, respect, including a better salary,” Antonio Cortes, the UFW’s internal organizer coordinator, told me in Spanish. The workers’ main concern, he said, is the employer, “has made many promises, but they have not kept these promises.”
For example, “we ask for a wage increase, and they say they will give it to us – but we are deceived,” explained employee Jesús Zúñiga, who has been with the company since 1999.
Around 8:15 a.m., the farmworkers traveled to the company’s packinghouse in Firebaugh, where workers like Marcelino Pacheco, above – who had already signed a card authorizing the UFW to represent him, and had proudly pinned it to his shirt – encouraged the packinghouse workers to join their push for union representation. They chanted various slogans: Que es lo que queremos? Un contrato! (What do we want? A contract!) and Si no piscamos, no se empaca! (If we don’t pick, there is nothing to pack!)
The video below captures the energy of the morning:
UPDATE: This morning between 3 a.m. and 6 a.m., the Gargiulo workers voted on whether to unionize or not. The votes will be counted at 11:30 a.m.