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

 

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 I’m Getting Better Even When I Think I’m Not

“Ups and downs are better than straight down.”

The other day, I found this cryptic message scrawled on a sticky note inside my desk. I had completely forgotten that this used to be one of my favorite sayings in the years when I was still fighting through the brain inflammation from PANS. But now, it’s taken on a whole other level of meaning with my new challenges…

I remember clearly the day I was diagnosed with PANS, and my neurologist said I needed IVIG treatment urgently. It would be an infusion of antibodies from thousands of human donors in an attempt to stop my own autoimmune antibodies from attacking my brain.

Continue reading “Why I’m Getting Better Even When I Think I’m Not”

The Questions No One Should Have to Ask: Life on the Verge of Relapse

As I opened my eyes to the morning sunlight peeking through my blinds, for a feel blissful seconds, I forgot the many reasons I shouldn’t feel as calm as I did in that moment.  But not a minute later, it all came rushing back, and my stomach did a somersault.

I rolled over and saw a missed call from my infusion pharmacy, and all at once I remembered the horrible quandary I’m in.  I remembered the unfortunate events that led to it.  And worst of all, I remembered that losing access to monthly IVIG treatments could mean I was on the verge of a relapse that would make me lose my mind. Continue reading “The Questions No One Should Have to Ask: Life on the Verge of Relapse”

On the Radio Today! A Special for PANS Awareness Day 2018

Today is PANS Awareness Day 2018.  There’s so much I could write as someone who has lived with PANS for most of my lifeeven more than I’ve already said in the 100,000+ words I’ve written in previous posts on this blog.

However, I’m doing things differently this year, and instead of posting about PANS awareness, I’m going to speak on national talk radio.  I’ll be interviewed on Worcester, Massachusetts’s John DiPietro show along with some New England PANS Association board members and a PANS parent. Continue reading “On the Radio Today! A Special for PANS Awareness Day 2018”

Interview with Me Tonight: A Special Announcement

Hi everyone, I’m interrupting our regular programming to let you know I’m speaking on the Stanford PANS Parents Support Group teleconference tonight at 5:45 Pacific Time!

You don’t have to be in California to listen.  You can hear it by calling 1 (650) 724 9799.  International numbers are available here.  The meeting ID is 649 394 165.

Dr. Frankovich from the Stanford PANS clinic will be conducting a Q&A at 5:45, and then I speak around 6:30.  I’ll be sharing my story, some encouragements, and some things I wish I could’ve told my parents when I was at my worst.

I hope you’ll join me!

When Getting Better Hurts More Than Staying Sick: The Paradox of Recovery

In the last couple of months, I’ve had a breakthrough in my recovery.  After being mostly couch-bound since January, I’m now able to run.  And my cognitive abilities have improved so much that I just finished a small project.  So many things I’ve hoped for have become reality!

I thought I’d feel nothing but elation if I ever got back to this point, but instead, now that I’m here…

I’ve found a dark side that no one wants to talk about.

Continue reading “When Getting Better Hurts More Than Staying Sick: The Paradox of Recovery”

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

Brain MRI.jpg

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”

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

In June 2014, I lost my body. 

Over seventeen hours, I watched in shock as my body grew a mind of its own, erupting in wild, bizarre movements I couldn’t control.  What started as innocuous twitches in my  legs grew into full-body thrashes and twists and jerks over the course of one day.  And then I realized I couldn’t walk, because every few steps, my legs gave out and sent me collapsing to the floor.  Continue reading “I Woke up in a Body I Didn’t Recognize: Living with Involuntary Movements”