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!
As a PANDAS kid, I know what a journey it is to have my life interrupted, to be repeatedly misdiagnosed and mistreated, and to ultimately find a solution for my...
Our friend gave ASPIRE permission to share this letter to her 14-year-old self. Many of us know how it feels to be too affected by PANS/PANDAS/BGE to go to school....
Lexi’s story exemplifies the absolute devastation patients and families go through as a result of being misdiagnosed for too long. In our article on Clinical Urgency of Diagnosing and Treating,...
Before We have four kids; two have PANS. Charlie’s came on like a freight train in the summer of 2010 at age 5. Maddie’s PANDAS was a slower unfolding until...
8 years ago, I was diagnosed with Pandas 7 years ago, I wobbled on my feet 6 years ago, I moved forward with my life 5 years ago, I realized...
Thank you to everyone who took a moment to celebrate the successes of the past year so our community can carry hope into 2022! ...
At the age of 8, my life, as it was, was taken in a week of sickness because of the flu. I woke up with hallucinations, severe OCD, and ADHD-like...
I think that people often forget about chronically ill teenagers. We aren't adults yet, but we also aren’t little kids anymore. We're in the middle of everything and everyone. We can understand...
Our family and B have gone through so much since December 2018. It has been completely devastating emotionally, mentally, physically, and financially. At the time, there didn’t seem to be...
Carrie knows firsthand how much PANS PANDAS can take a toll on parents and the family. She shares her story to let other parents know there is light at the...
I asked my son if I could share his story with ASPIRE; he could help people. For the first time in a long time, he smiled and said he felt...
I have had the privilege of getting to know Cici a little bit this year, and we had chatted about her sharing part of her PANS PANDAS BGE experience with...
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.