When doctors couldn’t stop her daughter’s seizures, this mom earned a PhD and found a treatment herself.
Savannah Salazar (left) and her mother, Tracy Dixon-Salazaar, who earned a PhD in neurobiology in the quest for a treatment of her daughter's seizure disorder.
Twenty-eight years ago, Tracy Dixon-Salazaar woke to the sound of her daughter, two-year-old Savannah, in the midst of a medical emergency.
“I entered [Savannah’s room] to see her tiny little body jerking about violently in her bed,” Tracy said in an interview. “I thought she was choking.” When she and her husband frantically called 911, the paramedic told them it was likely that Savannah had had a seizure—a term neither Tracy nor her husband had ever heard before.
Over the next several years, Savannah’s seizures continued and worsened. By age five Savannah was having seizures dozens of times each day, and her parents noticed significant developmental delays. Savannah was unable to use the restroom and functioned more like a toddler than a five-year-old.
Doctors were mystified: Tracy and her husband had no family history of seizures, and there was no event—such as an injury or infection—that could have caused them. Doctors were also confused as to why Savannah’s seizures were happening so frequently despite trying different seizure medications.
Doctors eventually diagnosed Savannah with Lennox-Gaustaut Syndrome, or LGS, an epilepsy disorder with no cure and a poor prognosis. People with LGS are often resistant to several kinds of anti-seizure medications, and often suffer from developmental delays and behavioral problems. People with LGS also have a higher chance of injury as well as a higher chance of sudden unexpected death (SUDEP) due to the frequent seizures. In about 70 percent of cases, LGS has an identifiable cause such as a brain injury or genetic syndrome. In about 30 percent of cases, however, the cause is unknown.
Watching her daughter struggle through repeated seizures was devastating to Tracy and the rest of the family.
“This disease, it comes into your life. It’s uninvited. It’s unannounced and it takes over every aspect of your daily life,” said Tracy in an interview with Today.com. “Plus it’s attacking the thing that is most precious to you—your kid.”
Desperate to find some answers, Tracy began combing the medical literature for information about epilepsy and LGS. She enrolled in college courses to better understand the papers she was reading.
“Ironically, I thought I needed to go to college to take English classes to understand these papers—but soon learned it wasn’t English classes I needed, It was science,” Tracy said. When she took her first college science course, Tracy says, she “fell in love with the subject.”
Tracy was now a caregiver to Savannah, who continued to have hundreds of seizures a month, as well as a full-time student, studying late into the night and while her kids were at school, using classwork as “an outlet for the pain.”
“I couldn’t help my daughter,” Tracy said. “Studying was something I could do.”
Twelve years later, Tracy had earned a PhD in neurobiology.
After her post-doctoral training, Tracy started working at a lab that explored the genetics of epilepsy. Savannah’s doctors hadn’t found a genetic cause for her seizures, so Tracy decided to sequence her genome again to check for other abnormalities—and what she found was life-changing.
Tracy discovered that Savannah had a calcium channel mutation, meaning that too much calcium was passing through Savannah’s neural pathways, leading to seizures. The information made sense to Tracy: Anti-seizure medications often leech calcium from a person’s bones. When doctors had prescribed Savannah calcium supplements in the past to counteract these effects, her seizures had gotten worse every time she took the medication. Tracy took her discovery to Savannah’s doctor, who agreed to prescribe her a calcium blocker.
The change in Savannah was almost immediate.
Within two weeks, Savannah’s seizures had decreased by 95 percent. Once on a daily seven-drug regimen, she was soon weaned to just four, and then three. Amazingly, Tracy started to notice changes in Savannah’s personality and development, too.
“She just exploded in her personality and her talking and her walking and her potty training and oh my gosh she is just so sassy,” Tracy said in an interview.
Since starting the calcium blocker eleven years ago, Savannah has continued to make enormous strides. Though still unable to read or write, Savannah enjoys puzzles and social media. She’s “obsessed” with boys, says Tracy. And while Tracy suspects she’ll never be able to live independently, she and her daughter can now share more “normal” moments—something she never anticipated at the start of Savannah’s journey with LGS. While preparing for an event, Savannah helped Tracy get ready.
“We picked out a dress and it was the first time in our lives that we did something normal as a mother and a daughter,” she said. “It was pretty cool.”
Two Conservative Icons Gave Opposite Advice on COVID-19. Those Misinformed Died in Higher Numbers, New Study Reports.
Sean Hannity (left) and Tucker Carlson each told their audience opposite information about the threat of COVID-19, with serious consequences for those misinformed.
The news sources that you consume can kill you - or save you. That's the fundamental insight of a powerful new study about the impact of watching either Sean Hannity's news show Hannity or Tucker Carlson's Tucker Carlson Tonight. One saved lives and the other resulted in more deaths, due to how each host covered COVID-19.
Carlson took the threat of COVID-19 seriously early on, more so than most media figures on the right or left.
This research illustrates the danger of falling for health-related misinformation due to judgment errors known as cognitive biases. These dangerous mental blindspots stem from the fact that our gut reactions evolved for the ancient savanna environment, not the modern world; yet the vast majority of advice on decision making is to "go with your gut," despite the fact that doing so leads to so many disastrous outcomes. These mental blind spots impact all areas of our life, from health to politics and even shopping, as a survey by a comparison purchasing website reveals. We need to be wary of cognitive biases in order to survive and thrive during this pandemic.
Sean Hannity vs. Tucker Carlson Coverage of COVID-19
Hannity and Tucker Carlson Tonight are the top two U.S. cable news shows, both on Fox News. Hannity and Carlson share very similar ideological profiles and have similar viewership demographics: older adults who lean conservative.
One notable difference, however, relates to how both approached coverage of COVID-19, especially in February and early March 2020. Researchers at the Becker Friedman Institute for Economics at the University of Chicago decided to study the health consequences of this difference.
Carlson took the threat of COVID-19 seriously early on, more so than most media figures on the right or left. Already on January 28, way earlier than most, Carlson spent a significant part of his show highlighting the serious dangers of a global pandemic. He continued his warnings throughout February. On February 25, Carlson told his viewers: "In this country, more than a million would die."
By contrast, Hannity was one of the Fox News hosts who took a more extreme position in downplaying COVID-19, frequently comparing it to the flu. On February 27, he said "And today, thankfully, zero people in the United States of America have died from the coronavirus. Zero. Now, let's put this in perspective. In 2017, 61,000 people in this country died from influenza, the flu. Common flu." Moreover, Hannity explicitly politicized COVID-19, claiming that "[Democrats] are now using the natural fear of a virus as a political weapon. And we have all the evidence to prove it, a shameful politicizing, weaponizing of, yes, the coronavirus."
However, after President Donald Trump declared COVID-19 a national emergency in mid-March, Hannity -- and other Fox News hosts -- changed their tune to align more with Carlson's, acknowledging the serious dangers of the virus.
The Behavior and Health Consequences
The Becker Friedman Institute researchers investigated whether the difference in coverage impacted behaviors. They conducted a nationally representative survey of over 1,000 people who watch Fox News at least once a week, evaluating both viewership and behavior changes in response to the pandemic, such as social distancing and improving hygiene.
Next, the study compared people's behavior changes to viewing patterns. The researchers found that "viewers of Hannity changed their behavior five days later than viewers of other shows, while viewers of Tucker Carlson Tonight changed their behavior three days earlier than viewers of other shows." The statistical difference was more than enough to demonstrate significance; in other words, it was extremely unlikely to occur by chance -- so unlikely as to be negligible.
Did these behavior changes lead to grave consequences? Indeed.
The paper compared the popularity of each show in specific counties to data on COVID-19 infections and deaths. Controlling for a wide variety of potential confounding variables, the study found that areas of the country where Hannity is more popular had more cases and deaths two weeks later, the time that it would take for the virus to start manifesting itself. By March 21st, the researchers found, there were 11 percent more deaths among Hannity's viewership than among Carlson's, again with a high degree of statistical significance.
The study's authors concluded: "Our findings indicate that provision of misinformation in the early stages of a pandemic can have important consequences for health outcomes."
Such outcomes stem from excessive trust that our minds tend to give those we see as having authority, even if they don't possess expertise in the relevant subject era.
Cognitive Biases and COVID-19 Misinformation
It's critically important to recognize that the study's authors did not seek to score any ideological points, given the broadly similar ideological profiles of the two hosts. The researchers simply explored the impact of accurate and inaccurate information about COVID-19 on the viewership. Clearly, the false information had deadly consequences.
Such outcomes stem from excessive trust that our minds tend to give those we see as having authority, even if they don't possess expertise in the relevant subject era -- such as media figures that we follow. This excessive trust - and consequent obedience - is called the "authority bias."
A related mental pattern is called "emotional contagion," in which we are unwittingly infected with the emotions of those we see as leaders. Emotions can motivate action even in the absence of formal authority, and are particularly important for those with informal authority, including thought leaders like Carlson and Hannity.
Thus, Hannity telling his audience that Democrats used anxiety about the virus as a political weapon led his audience to reject fears of COVID-19, even though such a reaction and consequent behavioral changes were the right response. Carlson's emphasis on the deadly nature of this illness motivated his audience to take appropriate precautions.
Authority bias and emotional contagion facilitate the spread of misinformation and its dangers, at least when we don't take the steps necessary to figure out the facts. Such steps can range from following best fact-checking practices to getting your information from news sources that commit publicly to being held accountable for truthfulness. Remember, the more important and impactful such information may be for your life, the more important it is to take the time to evaluate it accurately to help you make the best decisions.
Dr. Steffanie Strathdee, an infectious disease epidemiologist, saved her husband Tom from a superbug infection by mobilizing scientists around the world to help him access experimental phage therapy.
[Editor's Note: This is the fifth episode in our Moonshot series, which explores cutting-edge scientific developments that stand to fundamentally transform our world.]
Kira Peikoff was the editor-in-chief of Leaps.org from 2017 to 2021. As a journalist, her work has appeared in The New York Times, Newsweek, Nautilus, Popular Mechanics, The New York Academy of Sciences, and other outlets. She is also the author of four suspense novels that explore controversial issues arising from scientific innovation: Living Proof, No Time to Die, Die Again Tomorrow, and Mother Knows Best. Peikoff holds a B.A. in Journalism from New York University and an M.S. in Bioethics from Columbia University. She lives in New Jersey with her husband and two young sons. Follow her on Twitter @KiraPeikoff.