Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators

This week, legislators in Wisconsin have the opportunity to save hundreds of lives and millions of taxpayer dollars: a bill to establish an advisory educational council on PANS/PANDAS is under review.  New York is also considering similar policies, and several others including Virginia have successfully implemented them.

To those who have never heard of PANS/PANDAS or seen the devastating effects firsthand, perhaps Wisconsin’s proposed PANS/PANDAS Advisory Council is viewed as yet another tentacle of government bureaucracy that serves a small minority of people.

However, the truth is that PANS/PANDAS is one of the biggest public health crises today, affecting 1 in 200 people, but it’s gone ignored and mistreated by the medical community at large.

Greater awareness would allow thousands of people with this disorder (many of whom are children and teens) to become productive members of society and escape a lifetime of ineffective psychiatric care.

I know firsthand that PANS/PANDAS has catastrophic effects on those who suffer from it…

As I made my way through the halls to my neurologist’s office a few months ago, I stopped in my tracks as I saw a face I recognized. She was a little girl receiving IVIG treatment and roaming the halls hooked up to an IV bag pole, accompanied by her mother and a nurse. She was exhausted. There was no light in her eyes. She had a sense of burden and deep sadness about her that penetrated to the depths of her soul.

Once you’ve seen the face of a child with PANS, you can never forget it.

Over the past three years since I was diagnosed at nineteen years old, I’ve heard so many heartbreaking stories about what this illness can do. I’ve seen the look of terror in children’s faces and the grief and weariness in the parents’ eyes. I’ve watched as my own life fell apart, flare by flare. I’ve spent what should’ve been my best years wanting nothing more than to find my lost mind.

Although PANDAS and PANS are curable, getting a diagnosis, let alone proper treatment, is far too difficult. It took me eight years to find an answer. It took me declining so much that I could no longer walk, stopped eating, became detached from reality, existed in a constant half-conscious state, and threatened to kill myself before doctors finally admitted that there could be a single cause to an alleged list of seven different syndromes and illnesses.

And I am one of the lucky ones.

My story has a happy ending: after three IVIG treatments, a tonsillectomy, IV steroids, and several years of antibiotics, though I still have some symptoms and take medications, I have my life back. I graduated from a prestigious college summa cum laude, earning straight-A’s and leaving my mark in my chosen field. But without treatment, I would still be spending my days home-bound, unable to work or go to school, and constantly being watched by my parents so I wouldn’t hurt myself.

Sadly, my story may still be the exception—not because PANS/PANDAS is rare, but because it is common and many people may never receive a diagnosis. The disease is likely responsible for as much as 25% of cases of childhood OCD and Tourette’s. As many as 1 in 200 people may have this devastating condition. Though a few may outgrow it without medical interventions, for plenty of others like me, left untreated, it can lead to a lifetime of mental illness and disability.

But the deleterious effects of PANS/PANDAS extend far beyond those who have it and their loved ones...

PANS/PANDAS is a burden on taxpayers. It can be avoided with awareness and proper treatment.

It’s NOT a mental illness—it’s an infection-triggered autoimmune attack against the brain that presents with debilitating psychiatric and neurological symptoms such as the ones I described above (and many others from which I was spared). People with PANS/PANDAS are mistaken for psychiatric cases and treated with medications and therapy that fail to improve them.

The average inpatient psychiatric stay in a government-run hospital costs $2000 per day, as estimated by Becker’s Hospital CFO Report. Those with PANS often undergo multiple hospitalizations because they are misdiagnosed with mental illness, and standard treatments for mental illness cannot control an autoimmune disease. They are therefore sentenced to a lifetime of ineffective psychiatric care and mental health hospitalizations that yield no lasting improvements.

For example, a case study by Standford University describes a thirteen-year-old girl who was misdiagnosed with bipolar disorder and then spent two years in psychiatric institutions and group homes. After she was diagnosed and treated for PANS, she returned to a “normal teenage life at home” and will grow up to be a productive member of society. This is not an isolated case: there are likely countless others with incapacitating symptoms which could be remedied with adequate treatment for PANS.

Moreover, many children with PANS present with learning disabilities and behavior disorders and are placed in special education programs in public schools.  According to a report by the Special Education Expenditure Project, educating a single student with disabilities costs twice as much as a non-special needs student.

If children with PANS receive medical treatments to stop the autoimmune attacks against their brains, they can be mainstreamed and each save the state an estimated $6000 per year.  If 1 in 200 of the 867,000 public school students in Wisconsin are in special ed because of PANS/PANDAS, treating them would save the school system $26 million every year.

Unfortunately, help for PANS is difficult to find due to a lack of awareness in the medical community.

Because PANS/PANDAS was only discovered in the 1990’s, there are still only a handful of doctors in the USA who are considered to be experts in treating PANS/PANDAS, thanks to a lack of awareness and not enough research funding.  Their practices are overrun with cases.

Waiting lists can be long, and when you finally do get an appointment and a diagnosis, treatments such as IVIG and plasmapheresis are outrageously expensive and often not completely covered by insurance (though the net effect of treating PANS is far less costly). If you’re fortunate, antibiotics might be enough to put you into remission, but sometimes, insurance won’t cover these, either, because they don’t understand that infections can cause some seemingly psychiatric illnesses.

Thousands of children and families are suffering, but too many uninformed doctors have the nerve to send families on their way, blaming debilitating symptoms on “bad parenting” or “school stress.” If we all had a dime for every time we were told PANDAS is “controversial” or “not well understood,” perhaps everyone could afford a $15,000 IVIG treatment!


So to all the legislators considering a bill that will educate medical professionals on PANS… Please, help us.

Help us raise awareness. Help us inform more doctors, psychologists, and school nurses so that it doesn’t take people like me so many years of suffering to get a diagnosis. Help us get more insurance companies to recognize PANS and cover more treatments so that more patients can get the care they need. Help us release thousands of people with undiagnosed and untreated PANS from a lifetime sentence of illness, disability, and taxpayer-funded mental health services that are ineffective for a treatable autoimmune disease.

PANDAS/PANS needs awareness because that sad girl I saw in the hallway that day is in every school and mental health ward across America—yet many of her may never get better or know what stole her childhood and personality.

PANS/PANDAS is not rare—just rarely diagnosed.

With greater awareness of PANS/PANDAS and more research, there can be a day when it’s unheard of for a doctor to deny the existence of such a devastating syndrome. There can be a day when the only thing parents have to worry about when their child gets PANS is helping him get better—not finding a believing doctor, not wondering how they can bring a terrified and uncontrollable child across the country for a consultation, and not paying for treatment.

There can be a day when people with PANS get proper treatment promptly, which spares them a lifetime of suffering, needless psychiatric hospitalizations, and years in special education programs—but only if statewide and nationwide measures are taken to increase awareness.

But until then, I will keep writing and lobbying for awareness because for so many, that day can’t come soon enough.


WI Senate Bill 535, which establishes a statewide advisory council on PANS, will die if the Senate Committee does not approve it by this Friday, February 23rd. You can help even if you don’t live in Wisconsin by sending messages and social media posts to these Senators.  The more states that establish councils like this, the more of a precedent it sets for other states to follow suit. 

Contact the Senators here:

Senator Kapenga

Senator Stroebel


PANS Symptoms Pic-small

PANS/PANDAS is an autoimmune reaction triggered by Strep, Pneumonia, Lyme, Mono, Stress, etc. resulting in an acute onset of neuropsychiatric symptoms that can include: separation anxiety, OCD, tics, age regression, ADHD, sleep difficulties, personality changes, urinary frequency, irritability, rage, sensory sensitivities, deterioration in learning abilities, and anorexia.


For scientific research showing why PANS/PANDAS is a serious and legitimate medical disorder that can be treated successfully, please refer to these sources:

PANDAS Physicians Network Research Library

Moleculera Labs Research Library


A version of this post originally appeared in October 2015 for PANDAS/PANS Awareness Day.

Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS

This week, I made the mistake of reading the PANDAS Wikipedia page, and now I’m boiling over:

“Treatment for children suspected of PANDAS is generally the same as standard treatments for [Tourette Syndrome] and OCD. These include therapy and medications…”
Continue reading “Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS”

My Disease Could Make Me Lose My Mind. Here’s How I’m Coping…

After eleven years of brain-related chronic illness, I’ve come to live in a constant state of uncertainty not only regarding my conditions, but regarding my entire life.

I never imagined I would ever get sick in the first place, let alone to then be sick for over a decade. The fact that my illness happened at all has taught me that no matter how certain you feel about your life, you can’t really know what the future holds. Continue reading “My Disease Could Make Me Lose My Mind. Here’s How I’m Coping…”

Is This the Hardest Job in the World?

As graduation approached last semester, people constantly asked what was next. What did I want to do with my life? Did I have a job? Would I stay in the city? Was I going to grad school?

Before my PANS relapse in August, I thought I knew all the answers. However, this disease returned not only to attack my brain, but to destroy all my plans.

Continue reading “Is This the Hardest Job in the World?”

Not About Symptoms: The Truth on PANS/Lyme Recovery

When people talk about PANS and Lyme recovery, I’m frustrated that it’s always in terms of symptoms. For me, it’s never about the symptoms—it’s about coming back from the dead and regaining the parts of me that were lost.

When PANS makes my immune system attack my brain, the physical effects (similar to a brain injury) give me a mental sense of losing who I am and even of being disconnected from reality.

To be honest, I’m vexed that I never seem to adequately describe what it’s like down in the abyss of PANS and Lyme, because it can’t be understood by talking about my symptoms. I want everyone to know that what happens on the inside—not only the visible symptoms—is what ultimately defines recovery for many of us.

What Happens in My Mind During a Flare?

You see, when I have a PANS relapse, as I did starting in August, it’s like someone kidnaps me from my own body. It’s as if they take out everything that makes me myself and leave behind a shell that only looks like me on the outside.

When I’m in a flare, there’s a wall separating me from everyone, as if I walk around in a semi-opaque plastic box that mutes and dims everything I try to perceive.

I’m both a puppet and a spectator of my life, mechanically going through my activities as normally as I can while not being a part of them anymore. My days mean showing up invisible and ignored at my own birthday party while watching everyone celebrate without me.

In those times, my thoughts and reasoning make sense to me, but when I have to interact with the external world, everything is confusing. No one understands what I’m trying to tell them, because I can’t find the right words to crystallize the ideas in my head when I speak. I feel like I’m on a whole other planet from everyone else, and the loneliness and lack of communication is devastating.

Sometimes, I see the ceiling and the floors dancing around, and I know I’m hallucinating, so then I wonder: what else am I seeing and feeling and experiencing that isn’t based in reality? One of the hardest parts of my flares is the sensation that I’m losing my mind while being lucid enough to realize I can’t know how far gone I am—and wondering how much farther I’ll fall.

Yet as awful as the detachment from life and reality is, the worst part is by far the psychiatric torture that results when the brain is inflamed. To have a PANS/PANDAS flare is to be forced to drink the most bitter elixir of despair, rage, and panic stirred together into a brain-crushing poison…

It makes you scream and run and pull at your hair because you’re trapped inside a mind that terrifies you—and there’s no way out. You’re afraid because you feel like a menacing outside force is in control of your body. Your thoughts are turned against you, taunting with hopeless lies and instilling irrational fears and obsessions that consume every moment. It’s so unbearable that you’re not sure how you’ll survive another minute, and you hope the PANS potion will kill you.

So much of what I experience and feel during a flare cannot be quantified objectively or understood by what everyone sees on the outside. People do tell me I look less tormented or more like myself when I get better, but they have no way of knowing the magnitude of the transformation—or the profoundness of suffering from which I’m emerging.

You can’t measure one’s sense of “self” with any blood work or symptom scale—especially if you’re asking a person whose brain and ability to process information has been compromised. By definition, I can’t accurately evaluate how ill I am while still ill. But when I’m better and back to myself, then I know.

And right now, I know.

In October, I began to come back to life after high-dose IV steroids. As I got better, I came to realize more and more how much of my personality had been stolen by this disease. My depression and anxiety were the first to subside, only hours after my first treatment, but some part of me knew I still wasn’t “right”—though I couldn’t quite identify what was wrong with me.

There was more to recovery than not having symptoms…

I hadn’t been able to socialize or do school or enjoy my hobbies, so when those things became not only possible, but natural after two more treatments, that’s when I felt I was truly healing—not just when my depression, anxiety, tics, and cognitive problems began to disappear.

Recovery wasn’t only about having fewer symptoms—it was about having more of my personality and the ability to enjoy and live my life.

Today, three months later, I feel great, but most people would say I’m nowhere near recovered: I’ve recently developed a “neurological limp” where my left foot drags behind me, and both legs give out every few steps when I walk. And I’ve started having complex vocal tics where I involuntarily utter strange (though usually hilarious) phrases against my will.

Obviously, I’m still hoping my Lyme/Bartonella treatment will knock out these remaining problems, but trust me: I’m doing far better than my symptoms might suggest.

These days, I’m enjoying being alive, I’m seeing friends, doing grad school applications, and writing my book (plus intensive outpatient therapy for my eating disorder, but that’s a whole other story).

I might seem bad on the outside, but I feel connected to reality and like I’m part of the world around me—things that were unattainable just a few months ago.  I know better than anyone else how frustrating my lack of motor control is, but I also know it pails in comparison to what I experienced in the depths of PANS.

I’ve said it many times before, and I’ll say it again: recovery is never linear. There are all sorts of ups and downs and twists and turns. I could get discouraged that I continue having serious symptoms, or I can realize that having my personality back is the biggest and best leap forward that I could’ve asked for in my recovery.

It’s not about the symptoms for me.  It’s about coming alive again.

I Graduated College with PANS, Lyme, and…. Highest Honors!

This weekend, I’ve defied all odds; I’ve done what never should’ve been possible…

I graduated from college, Summa Cum Laude… While in a long-standing battle with PANS and Lyme Disease!

When I was first diagnosed, it felt like my life was a tragedy, and PANS was the ending.  I was sure that it had completely ruined me, and pursuing my dreams seemed inconceivable…

Continue reading “I Graduated College with PANS, Lyme, and…. Highest Honors!”

Do These 7 Symptoms Make College Impossible?

They say that “school refusal,” or a deterioration in school performance, is a hallmark symptom of PANS/PANDAS.

Continue reading “Do These 7 Symptoms Make College Impossible?”

What I Really Mean When I Say I’m Fine

My life with PANS and a brain on fire! (cred: KC Green)

As I hurried off to class the other week, suddenly, I knew things were awry: it was that strange and all-too-familiar feeling in my head that foretells an atonic seizure.

Continue reading “What I Really Mean When I Say I’m Fine”