Anastasia’s Story
Anastasia is a brave, resilient, and bright 22 year-old from New Hampshire who first began suffering from PANS/PANDAS at the age of 10. The following text contains direct excerpts and quotes from our interview with her.
What symptoms did you have, and which ones do you continue to experience?
“At onset: OCD, paranoia, ARFID, mood swings, sleep disturbances, insomnia, regression in school performance, severe anxiety and depression. Currently I still experience all of those plus a few more that have gotten worse over the last few years such as: motor tics, motor and sensory abnormalities, seizures, and increases in mood swings, sleep disturbances, and insomnia.”
Explain how PANDAS/PANS has influenced your personality and overall life experience. How have these symptoms impacted your life?
“It completely took me out of school at age 12 in 7th grade, I have yet to be able to get a high school diploma, a driver’s license, or a job. It keeps me housebound most days.”
Walk us through your medical experience. How many times were you misdiagnosed, how long did it take for you to get correctly diagnosed, and how did you navigate all of this while experiencing your symptoms?
“I don’t quite remember everything, but I do know I at least got the diagnosis on my medical background in 2024, possibly 2023. I still have yet to start any treatment but will see a neurologist in April which I have been waiting a year for.”
What is the most valuable advice you can offer to others who are in the thick of their PANDAS/PANS symptoms?
“You aren’t crazy, you are sick. You aren’t making it up, you are sick. Your brain is being attacked and is inflamed, your symptoms are valid, you matter.”
Have you found any resources or communities (online or in person) that have been helpful to you as someone with PANDAS/PANS?
“Any and all people sharing their journeys online with PANDAS/PANS or any chronic illness.”
What do you wish people understood about living with PANDAS/PANS that they might not see from the outside?
“We are constantly fighting against our own brains, whether we are in a flare or not, and more often than not we are constantly exhausted.”
What do you want other kids or teens experiencing PANDAS/PANS to know about their journey?
“Never stop fighting for your future.”
We love you, Anastasia. Thank you for your bravery 💚
