We know about PANS/PANDAS. We need the rest of the world to catch up.
We know about PANS/PANDAS. We need the rest of the world to catch up. Let’s talk about sharing our story and advocacy on PANS PANDAS Awareness Day I am not...
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!
Everything changed at 4
We wish nothing but healing wishes for Stori. Stori’s mom shared her story with us on the day of PANS PANDAS Awareness Action Week, when we shared many stories....
I’m determined to educate people about this illness
Not feeling alone is sometimes one of the most important parts of our PANS/PANDAS journey. I am so glad this brave 11th grader shared her story. Others see she...
Sudden onset and Tick-Borne illness does happen
Often we only think of tick-borne illnesses, like Lyme disease, as having a slow, gradual onset. We see acute physical symptoms and then months later we see neurologic or...
The importance of feeling validated and finding community
After being at a play date where a mother informed me that her brother was a neurologist and we should look into PANDAS, I had no idea where to...
Not “just” ADHD
Just like Holden, parents often hear about PANS/PANDAS through word of mouth or knowing a family with a kiddo already diagnosed. So, keep talking about PANS/PANDAS wherever you go....
A Story of Restricted Eating and Binging (and a little cake baking)
My son’s PANDAS journey began the way that most others have. B was in first grade, and one day he was our silly, mischievous, bright child; the next he...
Finally back in school and feeling better!
After you read this story, imagine what it is like for all those children who are not diagnosed correctly. You can paint a pretty bleak picture in your mind...
A Sydenham’s Chorea Story
Sydenhams Chorea is the prototype disorder for PANDAS. If you or your child has chorea movements, it is important to get a correct diagnosis. One may have an easier...
2022 PANS PANDAS Triumphs!
Thank you to everyone who took a moment to celebrate the successes of the past year so our community can carry hope into 2023! ...
March 27, 2023
Live Your Life, Not Your Diagnosis
Dedication to PANS/PANDAS Awareness and Advocacy with Advocate Gabriella True “It’s not always about overcoming, it’s about living.” Gabriella True Link to Podcast Episode on...
Share Your 2022 Triumphs!
Please share your success stories for ASPIRE’s 2022 Triumphs Highlights! We all know PANS PANDAS is rough (understatement) but let’s take a moment to celebrate the successes from...
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.