Category: Advocacy Essays

PANS/PANDAS Awareness Day 2021: Top Posts and Resources to Share

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Tomorrow, October 9th, is PANDAS Awareness Day.

Each year, it seems like parents lead the conversation. Some of this is because many who live with PANS are too young or too incapacitated to do it themselves. And I am so grateful for parents’ incredible efforts in raising awareness for this devastating illness––please keep it up. However, in order to be most effective, the conversation on awareness needs to center on what it’s like for the patients who actually live with the condition. We, the patients, are the ones who need the cures, so our voices should be amplified when possible.

I encourage all of you to not only post stories from parents’ perspectives tomorrow, but to also share stories from people who have lived with this condition themselves. I have compiled a list of what I think are my best advocacy essays and top posts on what PANS/PANDAS is a like, a guest post by another adult with PANS, and the Neuroimmune Foundation’s collection of patient stories. Please consider sharing at least one of these on your social media:

Why Ignoring Adults with PANS Hurts Everybody

Dear Sick, Scared 2015 Me: A Letter to Someone Whose Illness Uprooted Their Life

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

Why Autoimmune Encephalitis Doctors Need to Stop Ignoring PANS

These 3 Myths About PANS Are Ruining Lives

Why PANS Awareness Saves Lives

How PANS Really Feels

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

I Woke Up in a Body I Didn’t Recognize: Living with Involuntary Movements

Special Guest Interview with Author and PANS Survivor Madeline Dyer

Neuroimmune Foundation Blog: In Our Own Words

Additional Info on PANS/PANDAS

ASPIRE: What Are PANS & PANDAS?

ASPIRE: Diagnosing PANS & PANDAS (Scroll down for suggested labs)

Neuroimmune Foundation: Resources to Share with Your Doctor

The Dreaming Panda Blog: Resources, Support Groups, and Organizations

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Rare Disease Day 2021: What You Can Do to Demolish the Myth That PANS Is Rare

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On this Rare Disease day, for the 1000th time, let me clear something up and then show you how to fix it:

PANS/PANDAS is not rare, and it’s not only kids that have it. So please, stop referring to it as a “rare pediatric disorder.”

Current estimates say that PANS/PANDAS affects 1 in 200 kids. And since nothing magical happens when a person turns eighteen, you can be sure there are thousands and thousands of adults walking around who grew up and never got treated.

I have been advocating for awareness for nearly seven years, ever since I was diagnosed at age nineteen. We have seen much progress in research, but when I can still go to a doctor and hear “rare” and “pediatric,” it feels like I’ve been screaming into a void for all this time. And I realize that I am only one of thousands of advocates who probably feel the same. So if we haven’t been able to achieve major reforms in the treatment of this disorder so far, what are we missing?

Continue reading “Rare Disease Day 2021: What You Can Do to Demolish the Myth That PANS Is Rare” →

Why Ignoring Adults with PANS Hurts Everybody

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After twenty years in and out of group homes, psychiatric hospitals, and residential treatment centers, at twenty-nine, Jo* has never been stable enough to have a job. Jo lives with his parents between hospitalizations. Despite being incredibly smart, Jo barely finished high school due to several learning disabilities. Jo’s frequent panic attacks render him unable to drive. Jo almost died of cardiac arrest from anorexia and has attempted suicide multiple times. Continue reading “Why Ignoring Adults with PANS Hurts Everybody” →

Why Autoimmune Encephalitis Doctors Need to Stop Ignoring PANS

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Today is World Encephalitis Day, and I want to take a moment to shed some light on a certain controversy within the PANS and encephalitis communities:

Is PANS a form of autoimmune encephalitis, or is it something else?

Back in 2014, in a matter of weeks, I went from being a typical college student earning straight-A’s to a psychiatric cripple who was afraid to eat and didn’t want to exist anymore.  I also lost the ability to walk, was overcome with constant involuntary movements, and couldn’t stay awake for more than a few minutes at a time.

How could a person develop sudden-onset Tourette’s, narcolepsy, bipolar symptoms, and severe coordination problems simultaneously in isolation from each other? 

Continue reading “Why Autoimmune Encephalitis Doctors Need to Stop Ignoring PANS” →

These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine

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Brain MRI

In 2012, when I developed an extreme case of Obsessive-Compulsive Disorder overnight, all I wanted was to get better—not to spend the next six years fighting to get treatment for a “controversial” disease.  However, when conventional therapies failed, and I rapidly declined after Strep and mono two years later, only steroids were able to help my severe psychiatric symptoms.  It was then that I realized the truth wasn’t always easy to accept: Continue reading “These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine” →

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

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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” →

Why PANS Awareness Saves Lives

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For the last eleven years of my life, I’ve battled a debilitating yet misunderstood autoimmune disease called PANS. It’s a disorder where an infection or an environmental trigger confuses your immune system into attacking your brain. This leads to all sorts of problems like OCD, anxiety, depression, tics, involuntary movements, cognitive problems, and many more horrible things.  It affects at least 1 in 200 people, but you’ve probably never heard of it.  Many doctors haven’t, either.

Continue reading “Why PANS Awareness Saves Lives” →

Why PANDAS Awareness Matters

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As I made my way through the halls to my neurologist’s office last May, I stopped in my tracks as I saw a face I recognized. She was receiving IVIG 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 PANDAS, you can never forget it.

Continue reading “Why PANDAS Awareness Matters” →