Award-winning MSU Bias Busters project expands to explore lives of Americans often marginalized because of PANS/PANDAS

Where do you turn if a child in your neighborhood, congregation, classroom, athletic team, scout troop or community group suddenly changes? From one week to the next, that child seems to have turned from an easy-going, confident kid into someone you don’t recognize because of their anxiety or compulsive behavior or irritability that sparks friction with the other kids.

You ask other adults around you, because these symptoms could arise from a wide range of disorders—and someone mentions a term you’ve never heard: “I wonder if it’s PANS/PANDAS?”

Google points you to a complex array of scientific and medical terms—but it’s not much help on a personal level: What do you do tomorrow as someone who’s simply trying to care for a group of kids, one of whom may have this condition? 

You’ve never met anyone connected to PANS/PANDAS. You don’t know how to handle this—how to respond to the affected child let alone the other children in the group. Very quickly, you’re the one with anxiety, irritability and troubling behavior.

As you try to discuss this with the parents involved, you learn that they’re disoriented as well—perhaps even frantic. They had never heard of this diagnosis and they’re just starting to learn about resources available nationwide. That’s hard to do, because those resources, so far, are often scattered.

Everyone involved needs help. Everyone has questions about basic, everyday ways of living together.

Everyone needs answers.

So, you’ll be glad to learn: Help is on the way. 

What led the MSU Bias Busters to tackle the issues families face after a PANS/PANDAS diagnosis?

Over the past two decades, the Michigan State University School of Journalism’s award-winning Bias Busters project has produced two dozen books to help Americans understand our neighbors who seem different. Ignorance about those differences often leads to anxiety, which can spill over into hostility and even explode sometimes into bullying, hatred and violence.

We are proud of the vast number of subjects the Bias Busters students have explored—using gold-standard journalistic research techniques guided through interviews and always a blue-ribbon panel of national experts.

From ethnic, racial and cultural differences—to professional distinctions (like those shared by police officers or military veterans), gender issues and religious differences—the Bias Busters project continues to expand. Now, the team is exploring the lives of Americans who seem different because of physical conditions. A guide to people who stutter is in the works. And, as of this month, the Bias Busters are starting to work on a book about understanding families living with PANS/PANDAS.

If this article is the first time you’ve seen that term—well, please stay tuned for news about this upcoming book. Odds are, you’ve probably met a person whose life—or whose family life—has been affected by PANS/PANDAS. As MSU’s Joe Grimm, the founder and coordinator of the project, opened this latest Bias Busters class to students, he found that one of his 18 students told the class of personal experience with PANS/PANDAS. While no one knows exactly how many individuals across North America have PANS/PANDAS, so many cases have popped up that a half dozen North American nonprofits are focused on helping families care for those most affected, usually children.

We asked Joe Grimm to explain what he hopes will come from this project. He wrote:

The PANS/PANDAS project represents a new direction for Bias Busters. We have published more than 20 guides and have several more in the works. Most have been about ethnic, racial, religious, occupational or gender groups. Now, we must explain a little-known condition. Our goal is to answer 100 basic questions that will introduce this complex disorder and help readers to understand how PANS/PANDAS may be impacting their neighbors, or a student, patient, or friend.

We have seen many breakthroughs.

After we published “100 Questions and Answers About Latter-day Saints,” we heard from a member of the church who had spoken to our class: “I hope your students also know how much this means to people like me. This may be just another class for them, but I hope it’s more than that. If they truly understood what it means to and for the groups that they portray, then it would be.”

Joe Grimm’s MSU Bias Busters Welcome Ann Worley as an Ally

Author, journalist, educator, clergy-person—and a mother of a son with PANS—Texas-based Ann Worley is helping Joe Grimm to coordinate this project and to organize contacts with the blue-ribbon sources engaging with MSU students in coming months to ensure the resulting book is accurate, authoritative, fair and balanced.

In January, Ann traveled to East Lansing to meet in person with the MSU students. She explained:

I spent much of last fall making connections across the PANS/PANDAS community, gathering support for the PANS/PANDAS Bias Busters book project and working with co-founder of Front Edge Publishing, David Crumm, and Professor of Journalism, Joe Grimm, to help with the new MSU Journalism School course that began this month. With help from several nonprofit organizations and many of the readers who follow my website, we have raised the funds necessary to underwrite this project. Over the next few months, the MSU students will hear from a variety of experts and conduct interviews with parents, teachers, physicians and other professionals whose lives and/or work have been impacted by PANS/PANDAS. To help spread awareness, I’ve summarized some resources and personal background in a special page within my website, Gray Colored Glasses.

Care to learn more right now?

Since our publishing house will be sharing lots of columns, updates and news stories over the next couple of years about PANS/PANDAS—as we do with all of the other issues Bias Busters team tackles—we asked Ann to write a concise summary of this disorder that we can share with readers. Here’s what she wrote:

PANS/PANDAS is an emerging diagnosis that should be on everyone’s radar. PANDAS, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections, was identified first, in 1998, when Susan Swedo recognized a connection between a cluster of sudden symptoms in kids who’d had recent Strep infections, most notably, OCD. That diagnosis was expanded in 2010 to PANS, Pediatric Acute-onset Neuropsychiatric Syndrome, with evidence that the same cluster of symptoms could present after any source of infection or inflammation (not limited to Strep). In PANS/PANDAS, what appear to be abrupt behavioral changes or psychiatric symptoms are actually the result of an infection; rather than fighting the infection, however, the immune system attacks the brain. This is the essential message for doctors, teachers, parents, and communities: When we see acute “behavioral” changes in a child or youth, we need to consider PANS/PANDAS and determine whether a recent infection could be the cause. PANS/PANDAS will be a well-known disorder in a matter of years. We are standing on the edge of this threshold, however, and kids and families who are suffering need more awareness now.