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!
So, I noticed Sam posting about Tourette Syndrome (TS), Obsessive Compulsive Disorder (OCD), and PANS PANDAS (PP) on Instagram a few months ago. And my first thought was – oooh a young man is...
As a mom with a child who had been battling PANDAS/PANDA, I know how devastating living thru it is and how hopeless at times you can feel. I felt inspired to write this poem from my experiences and...
My gut told me to keep digging because up until that day my daughter did not have this struggle and I knew OCD and ASD are not sudden onset. I will never forget the first three days of our...
I have always been fascinated by the mystery, beauty and power of the mind. That is why I became a psychotherapist. Healing is not just an aspect of my career; it is a belief in the ability of the...
These sage words of advice come from a girl with PANS/Autoimmune Encephalitis. She often allows people to ask her questions in her stories. One day a mom asked, how can I best support my daughter...
I share our story so you know you are not alone and full healing as possible! My dear daughter 13 is fully healed! I actually came home to this tonight. We went through a lot believe me I have been...
We’re all better people because Mick is in our family.
We’re all better people because Mick is in our family. I’ve seen my other son choose his friends based on how they treated his brother. My wife and I have become advocates and helped when we can...
My goal in the future is to take what I have learned about PANDAS and to help spread awareness about the disorder so that others can better navigate their own experiences with children who have...
My oldest child was diagnosed with PANDAS at 6 and a half years old after sudden onset. At the height of her symptoms, my youngest was turning 2. I noticed immediate changes in the younger child, who...
Trigger Warning: Self-Harm behavior is discussed in this story. If your child has PANS PANDAS symptoms and subsequently gets diagnosed by a PANS specialist, we suggest initiating treatment right away...
I am proud of my journey. It made me the person I am today. I still have a while until recovery, but my progress is enough to motivate me to keep...
I think the biggest thing you can do for your PANDAS kid is never to give up on them!! Find what works for them and always advocate for their health and education. When someone tells you they cant...
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 was blown away by this dynamic group who worked as a team to focus on recovery with compassion, tenacity, and a lot of smarts. At […]
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.