My Head Is Not My Own
My Head is Not My Own written by Libby, age 13 my head is not my own and i feel so alone i think that i am losing it i’m...
Share and Learn from Each Other
PANS Patient & Family Stories
Submit Your Story Today!
We all have a story to tell. It is important for those who are living with PANS/PANDAS to share their experiences with others. It lets others know that they aren’t alone. They can read what you’ve gone through and think, “this is what I needed to read today.”
Our stories are powerful. They inform, educate, and reassure. Learning what PANS is really like from families and patients provides an invaluable window into the reality of living with a PANS diagnosis. Every story is unique in its own way but all have a universal connection that ties our experiences together. We are not alone in this diagnosis. We can support and learn from each other. Please read through the stories. We highly encourage you to submit your Personal Story today!
Trapped In My Own Body: My Life Experience With PANDAS/PANS
PANDAS affected every relationship in my life. I argued more with my friends and my brothers. There were days when no one wanted to be around me, and I don’t blame them. I didn’t understand why I...
Emma’s Story: When PANDAS Steals Childhood
Our daughter Emma is turning ten. Her birthday happens to fall on October 9 — which is also PANDAS Awareness Day. I don’t think there’s anything more ironic than that. Because for the past year...
When Inflammation Is Dismissed: B’s Battle with PANS and Tick-Borne Co-Infections
When Inflammation Is Dismissed: B’s Battle with PANS and Tick-Borne Co-Infections Acute neuroinflammation can be life-changing—and it’s appalling when providers dismiss these symptoms as...
Restricted Eating and Misdiagnosis: Sophie’s Journey with PANS
When severe food restriction and complex symptoms are mistaken for FND, proper evaluation is crucial. When Sophie got the flu at age 12, she didn’t expect it would mark the...
Sudden Changes Overnight: A Family’s Journey with PANDAS
When a child’s behavior changes dramatically overnight, early recognition can make all the difference. This 6-year-old daughter woke up with sudden, severe contamination OCD, separation anxiety,...
Finding Answers Against the Odds: One Family’s Journey with PANS
When your child declines rapidly and no one believes you—trusting your instincts can save the day. Countless calls to pediatricians and child psychologists led nowhere. No one believed her symptoms...
Sweet & Sassy McKenzie’s Story
McKenzie hasn't officially been diagnosed with PANDAS by her pediatrician, as we are in the early stages; however, no one can convince me otherwise. My family's life has been completely turned upside...
Penelope’s Story Started with a Tick Bite
One year ago, Penelope was bitten by a tick, marking the beginning of our journey to uncover the truth. When she showed me the characteristic bull's-eye bite, I initially mistook it for a spider...
Something Doesn’t Feel Right: Evelyn’s PANDAS Story
Evelyn’s intrusive thoughts, rage, and vomiting fears were finally linked to strep and a PANDAS diagnosis. Evelyn’s challenges began early with fears of vomiting, panic attacks, aggression, and...
When Everything Changes Overnight: A Parent’s Journey Through PANS/PANDAS
Read more about one family’s story and what PANS/PANDAS really looks like, written by ANAD Community Member and ASPIRE’s Midwest Lead and Restricted Eating Lead, Breanne Failor One day, your...
When Overnight Everything Changed: A Parent’s Perspective on PANS/PANDAS
Sometimes what looks like an eating disorder is really a symptom of PANS/PANDAS. Too many families miss the real cause and go without the help their kids need. That’s why we’re so glad @F.E.A.S.T...
Case Study – Recovering from PANS, Lyme, CIRS
A Talk with Nathan Who is Recovering from PANS/PANDAS, Lyme & CIRS Gabriella: I had a chat with Dr. Nancy O’Hara, Nathan, and his mom a few years ago and […]
For my son, symptom onset was not overnight. He had so many health issues starting the first few weeks of life, which continued throughout his early childhood. His body was in a near-constant state of infection and inflammation. Add his medical history to a family history riddled with autoimmune and strep-related health issues and it is no wonder that my son has PANS/PANDAS.
My child was diagnosed at the age of 6 with severe autism. No eye contact, social skills, empathy, poor academic skills.
Through Ella’s eyes: a child’s perspective on her journey with PANDAS
A child's perspective on her journey with PANDAS
My name is Ella and I was diagnosed with PANDAS at age 13, now 15. Before PANDAS I was a four-sport athlete (basketball being my favorite), I loved hanging out with friends and family, I was doing good in school, and I was your normal teenager.