Living with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) presents a unique set of challenges for affected children and their families. The journey is often marked by ups and downs, and each family’s experience provides valuable insight into managing these conditions. This blog aims to shed light on the lived experiences of families navigating through the intricacies of PANS and PANDAS by sharing their stories, in hopes of fostering understanding and community support.
During PANS PANDAS Awareness Action Week, Stori’s mom shared her daughter’s story with the Aspire community. They emphasized the importance of not feeling alone and being determined to educate others about this illness.
Alessia’s PANDAS Story:
The PANDAS Network shares stories of individuals and families, one of which is Alessia’s story, aiming to create a sense of community and assure others that they are not alone in this journey.
Nicole, diagnosed with PANS around age 9, shares her message for anyone living with PANS or PANDAS on the Neuroimmune Foundation’s platform. Despite facing challenges for over a decade, she emphasizes that there will be good days and bad days.
Ella’s Athletic Dream:
Ella, diagnosed with PANDAS at age 13, shares her perspective on Aspire about how PANDAS affected her athletic aspirations and social life, transforming her normal teenage life into a journey of overcoming PANDAS-related challenges4.
NEPANS Family Stories:
NEPANS shares a collection of family stories that delve into the daily lives and treatment protocols of those living with PANS/PANDAS, emphasizing that no one can describe living with PANS/PANDAS better than those who have experienced it5.
The shared stories reflect the resilience and courage of individuals and families affected by PANS and PANDAS. Through community stories, a deeper understanding and a stronger support network can be fostered, making a significant positive impact on the lives of those living with PANS and PANDAS. This community engagement is crucial not only for emotional support but also for advancing awareness and treatments for PANS and PANDAS.