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!
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...
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 symptoms; then, she suffers through...
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...
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...
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...
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...
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...
"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...
Romy runs an Instagram and Facebook account Tourettics Unite to spread awareness on Tourettes, OCD, and PANS/PANDAS. She and I have been touch a little bit over the past few months, and I have been...
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.