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!

A Long Slow Road to PANS PANDAS Recovery
A Long Slow Road to PANS PANDAS Recovery

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...

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The Wall Was Hard to See
The Wall Was Hard to See

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...

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Just Like Any Other Adult!
Just Like Any Other Adult!

Just Like Any Other Adult !

I am just like any other adult now, thanks to the IViGs and therapy. Do not get me wrong; I have struggled so much with my PANS PANDAS that I have wanted to give up many times. I have cried so hard...

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Diagnosis Day
Diagnosis Day

Diagnosis Stories

Do you remember the day your child officially got a diagnosis of PANS/PANDAS? Was it your first doctor? Was it your fifth? Were you devastated? Were you relieved to have an answer and the start of a...

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We Are Brave – A PANS PANDAS Patient Story
We Are Brave – A PANS PANDAS Patient Story

We Are Brave - A PANS PANDAS Patient Story

I guess my advice for a PANDAS family would to always be there for your sick child. To always tell them that they are brave. Because we are. There may only be 1 in 200 of us, but we are the bravest...

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A Long Overdue Diagnosis
A Long Overdue Diagnosis

"What happened to Ruth Anne?" her kindergarten teacher asked 26 years ago. She had experienced numerous infections and had tubes put in her ears. She struggled with attention and the once sweet, kind...

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Graduation! A PANS Story
Graduation! A PANS Story

So here we are, graduating by the skin of our teeth. Today with 13 months of sobriety. Just out of another flare in March, as allergies also trigger his immune system, he is holding a job down in a...

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