Imagine a child suddenly developing obsessive behaviors, struggling to eat, or experiencing uncontrollable tics after a simple strep infection. Sounds alarming, right? This is the reality for children with PANS and PANDAS, two neuroimmune disorders that often fly under the radar. But here's where it gets even more critical: these conditions can lead to severe complications, as tragically illustrated by the story of Alexandra Manfull, a young woman from Portsmouth who lost her life at just 26 due to PANDAS-related complications. Her story is not just a heartbreaking loss but a call to action—a reminder of why awareness is so crucial.
On Thursday, the Portsmouth Memorial Bridge glowed green, not just as a beautiful display, but as a powerful symbol of hope and awareness for World PANS/PANDAS Awareness Day. These acronyms stand for Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). Both conditions can strike children after common infections like strep throat or the flu, triggering a cascade of symptoms that go far beyond the typical aftermath of these illnesses. We're talking about sudden-onset obsessions, compulsions, severe food restrictions, motor or vocal tics, sleep disturbances, and sensory issues—symptoms that can upend a child's life and leave families searching for answers.
But here's where it gets controversial: Many people, including some healthcare professionals, remain unaware of how a simple strep infection can trigger such profound immune responses. Dr. Juliette Madan of Dartmouth Health Children's explains, 'PANDAS is triggered by a strep infection, and while strep is common in children, most people don't realize it can lead to organ dysfunction in the kidneys, heart, and brain.' This lack of awareness often delays diagnosis and treatment, leaving families like Alexandra's to grapple with devastating consequences. Gov. Kelly Ayotte has taken a step in the right direction by designating October 9 as PANS/PANDAS Awareness Day, but is it enough? What more can we do to ensure these conditions are recognized and treated promptly?
In honor of Alexandra, the Portsmouth-based nonprofit Alex Manfull Fund was established. On Thursday, her family and friends gathered not just to mourn but to advocate. 'The more people who know about this, the quicker people will be recognized, diagnosed, and treated appropriately,' said Susan Manfull, Alexandra's mother and the fund's executive director. Her words are a poignant reminder of the stakes: 'Had our daughter been diagnosed early on and treated appropriately, she would be here.' This isn't just a personal tragedy—it's a systemic issue that demands attention.
Dartmouth Health is leading the charge, with a team of experts dedicated to studying these disorders to improve understanding and treatment. Dr. Madan emphasizes, 'We're trying to raise awareness about children, adolescents, and adults who show changes in brain function and behavior that may stem from an underlying medical condition. We need to understand these conditions more clearly to identify the proper treatment.' But awareness alone isn't enough. What if we're missing cases because the symptoms are misattributed to other conditions? Or worse, what if the medical community isn't equipped to handle the complexity of these disorders?
As we reflect on the green glow of the Portsmouth Memorial Bridge, let's not just admire the sight but commit to spreading the word. Download the free WMUR app (Apple | Google Play) to stay informed, and subscribe to WMUR's YouTube channel for more updates. But more importantly, let's ask ourselves: Are we doing enough to support families affected by PANS and PANDAS? And what can we do to ensure no more lives are lost to these misunderstood disorders? Share your thoughts in the comments—let's start a conversation that could save lives.
