If someone gathered together 100 people, they would hear 100 different stories. Coming up on Thursday, Feb. 12, at the Marsh Arts Center is TILT: Stories on the Edge. It’s a collection of storytellers, story slam champions, caregivers, survivors and clinicians all deeply touched by a neuroimmune and autoimmune disorder referred to with the disarmingly cute name, PANS/PANDAS. 

While the storytellers will weave their magic with joy, growth, humor and unexpected possibility, the bottom line is PANS/PANDAS is frightening. Imagine: A child, typically 3 years old to late teens, gets a cold and within a blink of the eye they turn into somebody else. They emerge with sudden uncontrollable thoughts, repetitive behaviors, wild aggression and a host of other alarming symptoms.

It sounds like a scarier version of Pluribus, but the reality is more challenging than a TV show. 

Terry Downing is a Silicon Valley mom whose work in public relations is well known and applauded. She is also one of the people behind this storytelling showcase.

“My daughter was Patient No. 1 at Lucile Packard Children’s Hospital,” Downing said from her home in San Jose. “My daughter was hit on July 8th of 2011. She was 13 at the time. Overnight she became psychotic and developmentally delayed, and was misdiagnosed for 10 months as having bipolar and schizophrenia, when she actually had PANS, or we also call it autoimmune encephalitis of the brain.”

Lucile Packard Children’s Hospital started a clinic that consisted of two doctors and Downing’s beautiful daughter, Tessa, to study this elusive disease. With a deep background in PR, Downing wrote a story about her difficult journey in The Mercury News and it went viral.

“She’s about ready to turn 28. Because of the misdiagnosis, she is brain-damaged. She lives in a group home in Milpitas. She’s more like a 12-to-14-year-old. It’s an autoimmune disease. There’s no cure right now, and any type of infection whatsoever can put her into a tailspin and into a flare. And we just got out of a flare literally last month. It was a 17-month flare,” Downing said.

Gathering together to support these parents, and their up-turned lives, is crucial for them. Not only for them to process the heaviness of the day-to-day through the power of storytelling, but also for any parent who struggles to find support. And to spread the word on this often misdiagnosed disease. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is still a mystery that needs attention. 

Luckily there is a nonprofit, The Alex Manfull Fund, started by Susan Manfull, whose daughter Alex passed away from the disease at 26 years of age. This giving arm, dedicated to promoting education, funding research and raising awareness for PANS/PANDA, is a benefactor of TILT.

Another storyteller, and TILT co-producer, is East Bay resident Noreen Raja-Halpern. Raja-Halpern grew up earning her chops in debating contests, and is fierce about getting her point across and being heard. Two of Raja-Halpern’s three children have the disease.

“So about a year ago, two of my kids were diagnosed with PANS/PANDAS,” Raja-Halpern said, her children playing in the background. “It’s a really tragic and horrible disorder, and it often affects kids. My kids just got sick on different occasions. And we thought, ‘OK, this is normal. Kids get sick.’ And just a couple of days later, they woke up, and they were not the kids we knew anymore.

“My son in particular, who both of my stories are actually about,” she added. “He’s really easy to tell stories about; he’s a fascinating, amazing and brilliant kid. He’s so funny. And he’s struggling a lot. And so it makes for a really good story.”

This storytelling show premiered in Hermosa Beach, but the Berkeley edition offers new voices, with incredible personal stories. Ongoing stories—stories from the edge of our community. 

‘TILT: Stories on the Edge’ takes place on Thursday, Feb. 12, at 6pm, at The Marsh Arts Center at 2120 Allston Way, Berkeley. Tickets are $30. More info at givebutter.com/TILT-BERKELEY#.