"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."
""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."
TILT: Stories on the Edge at the Marsh Arts Center on Feb. 12 features storytellers, caregivers, survivors and clinicians affected by PANS/PANDAS. PANS/PANDAS is a neuroimmune autoimmune disorder that can cause abrupt onset of uncontrollable thoughts, repetitive behaviors, aggression and other alarming symptoms after common infections in children aged roughly 3 to late teens. Many patients receive psychiatric misdiagnoses before correct identification. One highlighted case involved onset at 13, a 10-month misdiagnosis, resulting in lasting cognitive impairment; a specialized clinic was formed to study the condition and no cure currently exists.
Read at East Bay Express | Oakland, Berkeley & Alameda
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