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.

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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…”
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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.

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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. Continue reading “Not About Symptoms: The Truth on PANS/Lyme Recovery”

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…

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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 a drop attack.

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Is This a Nightmare Come True?

Sometimes, you don’t get to wake up from your nightmare…

Lately, with each day that’s gone by, I’ve slipped farther and farther into the abyss of my inflamed brain. I’m in a bona fide PANS relapse—there’s no denying it now.

As it turns out, I’ve had too much faith in my Lyme/co-infections antibiotic protocol. Continue reading “Is This a Nightmare Come True?”

Why PANS Awareness Saves Lives

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.

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