Fifteen Years Misdiagnosed: My PANS Journey
⚠️ Trigger Warning: This story contains references to self-harm, suicidal thoughts, and substance use. Mature audiences only. ⚠️ A young adult endured years of psychiatric hospitalizations,...
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!
Haylie’s Healing Journey: A Story of Strength and Resilience
The key to treatment was aggressive intervention. But finding the right doctors was a battle. Most practitioners were unaware of PANS or didn’t believe in its severity. We were lucky to get a...
IVIG Stopped Ella’s Self-Harm
Trigger Warning: Self-Harm & Suicide The following story discusses experiences with self-harm, suicidal thoughts, and psychiatric hospitalization. If you are sensitive to these topics, please...
Share Your Triumphs From the Past Year!
Share Your Triumphs: Celebrating Wins in the PANS/PANDAS Journey We all know that living with PANS/PANDAS is an uphill battle—sometimes a mountain climb. But as we approach the...
Sammi’s Remarkable Comeback: From Struggle to Strength!
In late November of 2023, we noticed that our daughter, Sammi, had a limp. She had fallen and said her knee hurt. The next week, she began acting very tired...
Bennett’s PANS PANDAS Story
Bennett was a typically developing 7-year-old boy when he started second grade, the first year back to school full time after COVID-19, without masks. That December, he came down...
Don’t Give Up – Skylar’s PANS/PANDAS Story
Hi! My name is Skylar, and I was diagnosed with PANS in October 2023 after struggling with it for around 10 years. I was 7 or 8 years old...
The Story of Emily The Great
This is the journey of Emily, who is now 16. She began experiencing PANS symptoms in 2020 during the height of COVID-19; before that, Emily was a typical kid and did all the things that girls her age...
Never Ever Give Up: Jacqueline Lembesis’ PANDAS Story
The battle with PANDAS is no joke, but there is hope. Throughout my journey, my mantra has been Never Ever Give Up. I am a fighter, a warrior, like all those with PANS/PANDAS. I have found fun ways...
Elise’s Story: PANS/PANDAS treatment after a 15+ year diagnostic delay
Elise shared the story below on her PANS/PANDAS journey at the IOCDF Conference in 2024 as part of the panel “PANS & PANDAS: What is it, What to Look For,...
Understanding PANS PANDAS: Insights from Those Who Live It
Straight from the Heart: Students and Young Adults Share About PANS PANDAS Download PDF version: What I Want My Friends to Know About PANS PANDAS ASPIRE surveyed students and...
PANS PANDAS Triumphs!
Recent PANS/PANDAS Triumphs Thank you to everyone who took a moment to celebrate your recent success. Your stories provide hope to other families and patients! Would you like to share...
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.