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!
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...
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...
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...
My message to parents is to listen to your child and trust yourself. We all have strong parental instincts for a reason. I know there will be days when all you want to do is hide under the covers 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...
April 12th, 2019, is a day I will never forget. It was exactly one week after my daughter's 4th birthday, a Friday. Springtime, my favorite time of the year, the buds of my favorite wisteria, were...
Children suffering this disorder can indeed heal but early identification and correct interventions are crucial to having a successful...
My child was diagnosed at the age of 6 with severe autism. No eye contact, social skills, empathy, poor academic...
PANS Rocks! Come Join the Fun! Paint Rocks and Spread Awareness! ASPIRE spoke with Michelle Dowd, who has started a fun project for kids with PANS/PANDAS that also helps spread...
It is clear that not enough parents and professionals are educated about PANDAS. My pediatrician apologized to me for not diagnosing my son properly. She said that the children in her practice that...
Up until recently our PANS family story really only focused around T, but now X has own PANS story and so do I. We got lucky. We got lucky that...
The Happiest Place on Earth
They say that when your child has PANS/PANDAS that you often remember the exact moment something changed. For our oldest son, Neely, that “moment of change” happened in front of...
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.