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.”
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 firstname.lastname@example.org, or call (661)748-3142 and leave a message.
Or, write your experience on a white board, and e-mail us the picture.
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.
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 email@example.com.
Francisco Ramos, 13, of Firebaugh, was born with a collapsed lung, and is destined to be a chronic asthmatic.
He is one of the many Latino children in the San Joaquín Valley who are impacted by the region’s asthma epidemic, my co-worker Daniel Cásarez writes in this week’s edition of Vida en el Valle. His story was produced as a project for The California Endowment Health Journalism Fellowships.
In Fresno County, about 19.2 percent of children ages 1 to 17 have been diagnosed with asthma, according to KidsData.org. Statewide, about 14.2 percent of kids have been diagnosed with asthma.
Even with the huge number of asthmatic children in the region, Latino parents – especially those living in rural communities - lack information about the condition, Cásarez reports. He spoke with Drs. Óscar and Marcia Sablán, who have operated the Sablán Medical Clinic in Firebaugh for more than 25 years.
Too often, parents rely on humidifiers and Primatene mist and don’t realize it is just a short-term fix. A doctor’s examination is necessary.
“Basically people would not treat asthma; just opt for an ER visit,” said Marcia Sablán.
“They would put a lot of Vicks (vapor rub) on their chest. For someone who has not seen a physician, those are the things they do. They don’t realize they could feel better, and actually have a lot more energy when their asthma is controlled,” adds Óscar Sablán.
“If you’re not aggressive in treating the asthma, then the asthma persists into adulthood, and in a more malignant form.”
Not facing the exacerbations of asthma, another term for asthma attack, could lead to more frequent attacks, if early treatment is not sought.
“If you have a lot of attacks, you are at risk to have another one, but if you can get it under control for an extended period of time, then you have less of a chance of recurrence,” said Óscar Sablán.
To learn more about asthma, check out ‘Latinos lack asthma info’ by Vida en el Valle reporter Daniel Cásarez. Photos, both of Francisco Ramos, also by Cásarez.
Now I want to hear from you. What have you enjoyed reading about on Harvesting Health? What would you like to read more about?
In keeping with tradition, I will be celebrating Harvesting Health’s second birthday next Friday, June 8, at 3:30 p.m., at Fresno paletería La Reina de Michoacán.
Come for the fantastic paletas (did somebody say strawberries and cream?) and stay for the informal discussion about community health and environmental justice. It’s on me – especially if you are open to sharing your health and environmental goals, for an upcoming Harvesting Health feature!
RSVP by leaving a note in the comments section below – or by sending me a tweet!
The films – presented by HBO and the Institute of Medicine, with the Centers for Disease Control and Prevention and the National Institutes of Health, in partnership with the Michael & Susan Dell Foundation and Kaiser Permanente – feature case studies, interviews with health experts, and the stories of individuals and families struggling with obesity, according to the film’s website.
Here’s a trailer for the films:
Will you be tuning in? And do you think this film can make an impact in the San Joaquín Valley, where 70.9 pecent of Latino adults are overweight or obese?
If you don’t have HBO – or if you are interested in watching the films again with other Valley residents – consider attending a partial screening at the John W. Wells Youth Center in Madera on May 30 from 6 p.m. to 8 p.m. The event, hosted by Central Valley Health Network’s HEAL Zone and Kaiser Permanente, will also include a panel discussion intended to inspire ideas about how to make Madera a healthier place to live.
Pictured above: There are already some great obesity-prevention efforts in the San Joaquín Valley, including the Community Food Bank’s food demonstrations, and a walking path at the Selma flea market.
During a Zócalo Public Square event on Monday evening, an outstanding panel will tackle a huge question: Why is the Central Valley sick?
By now, we all know the statistics:
Despite its agricultural bounty, the San Joaquín Valley is one of the poorest regions in the country. And despite growing the food that nourishes the nation, the region has high rates of food insecurity and obesity.
Our environment is also sick, and that doesn’t help people’s health. Many low-income communities have contaminated drinking water. We have some of the dirtiest air in the nation, and an epidemic of asthma. Rural communities are exposed to harmful pesticides.
We have a critical shortage of primary care doctors and specialists. But simply adding more doctors to the region – without addressing the other social, economic and environmental factors – could prove nothing but a Band-Aid.
So, what can be done to improve the health of Valley residents?
In the post, ‘This Place is Sick,’ now on Zócalo’s website, I suggested that low-income residents need better access to the healthy fruits and vegetables grown in this region:
The prescription to improve the health of the San Joaquín Valley must begin with the area’s greatest asset: agriculture. I have covered great initiatives intended to make locally grown produce more accessible—including school farm stands, flea markets that accept EBT for produce, conversions of neighborhood liquor stores into corner stores featuring fresh produce, and the development of school gardens, where families can grow the products they are culturally accustomed to.
These efforts require little government funding, yet could improve the health of San Joaquín Valley residents. There is also an opportunity for innovative collaboration between the agriculture industry and health organizations.
I’m very interested to hear how panelists Sarah Reyes, Central Valley Program Manager of The California Endowment, John Capitman, executive director of the Central Valley Health Policy Institute, and Edward Palacios, CEO of San Joaquín Valley Rehabilitation, answer the question.
And I’m interested to hear your ideas! Join the discussion on Monday (May 7) at 6:30 p.m. at Arte Américas, 1630 Van Ness Ave., in Fresno. Or add your suggestions in the comment section below.
Sofía Gática, of Córdoba, Argentina, was one of six people honored with the international Goldman Prize today. The award, which comes with a prize of $150,00, bills itself as the “world’s largest prize honoring grassroots environmentalism.”
Gática’s story will resonate with San Joaquín Valley residents who have fought for years for health-protective laws regarding pesticides.
About 13 years ago, Gática’s baby daughter died of kideny failure. She soon noticed that residents in her working-class neighborhood of Ituzaingo were also suffering from alarming rates of leukemia, lupus and other diseases, according to this San Francisco Chronicle article.
Gática, who had only a high school education and no organizing experience, formed the group Mothers of Ituzaingó. They went door-to-door in their neighborhood, which is surrounded by soy bean fields, and discovered that pesticides were having a disastrous impact on the health of their community.
They found that only two households had not suffered from illness, according to the Chronicle. That spurred them to begin protesting the use of weed killers with a “Stop Spraying” campaign.
Their efforts eventually led to a ban on aerial spraying of agrochemicals within 2,500 meters of homes. (In comparison, some Valley counties have pesticide buffer zones of 400 meters.)
The short movie below captures Gática’s inspiring story.
When I spoke on the phone with Gática on Monday, I asked her if she had advice for Valley residents who were also concerned about the health impacts of pesticides. Valley communities have also experienced pesticide drift, and inexplicable health problems.
“I recommend demanding the rights to health and the environment,” she said.
She also recommended demanding the right to information – about what types of pesticides are being used, how they are being applied, and close to schools and homes they are being used.
Tracey Brieger, co-director of Californians for Pesticide Reform, said Gática’s story and advice is an inspiration to Valley residents fighting for health-protective pesticide laws.
Gática’s story, “would be a reminder that communities across the world are facing the same problems with pesticides, and it is very important to learn from each other,” Brieger said.
“The regulations and the rules are stronger in Argentina than they are here in California. We need to learn what it actually looks like to be health-protective.”