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!
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...
Read about one family's journey of how they handled their daughter's inability to attend in-person school full time and ultimately weaving together a partial in-school and homebound instruction...
These plushy brains are an excellent tool for my son to externalise his worries and concerns. We can take an indirect approach and talk about feelings and concerns without focusing so directly on...
Around 4th grade, Sylvie was at a friend's house, and I received a call that she wanted to come home. She was scared as she had seen something upsetting on TV; turns out it was a cat that had fallen...
I was so relieved to have a diagnosis that made sense finally, which gave us the hope of treating and recovering our...
PANS PANDAS Can Start as an Eating Disorder Note from ASPIRE: This is a must-read PANS PANDAS Patient Story. A typical happy young girl develops a severe eating disorder and other PANS PANDAS...
This story exemplifies how it is sometimes hard to see the sudden onset or sudden worsening of PANS PANDAS symptoms as you are living (struggling) through it. Remember, someone with PANS PANDAS does...
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.