Yes, Adults Get PANS/PANDAS, Too: 3 Steps to More Effective Advocacy for ALL Patients

A couple of weeks ago was PANDAS/PANS Awareness Day, and I admit I’m disappointed in a lot of people and organizations right now. Yes, I’m proud of the fundraising that happened and glad people are raising awareness of PANS in children. But why, in their advocacy, are so many still ignoring that teens and adults get PANS? Some of you really need to remove “children with PANS” from your lexicon. It’s just “people with PANS,” or “PANS patients,” or “children and adults with PANS.”

The diagnostic criteria for PANS don’t exclude adults. The diagnostic criteria for PANDAS technically requires childhood onset, but case reports of PANDAS in adults abound. There are millions of adults with PANS/PANDAS, most of whom aren’t yet diagnosed. PANS and PANDAS don’t magically disappear on someone’s eighteenth birthday. It’s time to stop acting and talking like they do.

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