The Simple Thing You Can Do to Help Thousands Living with PANS/PANDAS

As an adult with a neuroimmune condition that most doctors don’t know how to diagnose, let alone treat, all too often, I’ve felt like there was nothing I could do to change their minds. I would bring papers and mention the many fine hospitals that are researching PANS only to be dismissed and gaslighted. Why? Partly due to arrogance or wanting to maintain the status quo. But these behaviors have their root in the “P” being for pediatric, the fact none of the research studies mention adults, and the lack of enough large-scale studies in general.

Have you ever felt alone and frustrated by how little help is available while you watch your life waste away?

Now what if I told you that you could do something tangible that could change the situation? What if I told you there was a way for you to help bring PANS out of the grey area of medicine into which many providers place it? Continue reading “The Simple Thing You Can Do to Help Thousands Living with PANS/PANDAS”

How I Was Diagnosed with PANS When I Was 19

After weeks of waiting and hoping and worrying, the time had finally come for my appointment with the mysterious expert neurologist. My parents and I arrived half an hour early to a spartan waiting room with an almost-eery quiet. A single tub of building blocks and several stuffed panda bears made me wonder if the staff really understood that they had allowed an appointment for an adult.

Forty-five minutes later, this concern was allayed when the doctor emerged to call me back without batting an eye when she saw my nineteen-year-old self. But all at once, I felt my stomach do a somersault as it occurred to me that she could be my last hope. Eight years of misdiagnoses had led here. Could this surprisingly soft-spoken woman finally be the one to help?

Continue reading “How I Was Diagnosed with PANS When I Was 19”

My 6-Year Blogversary, My Greatest Hope, & What’s Next

Ten days ago, on my actual blogversary, I had a nice 6-year anniversary post planned—the usual reflection on how I started blogging and how much it means to me. And I still stand by my belief that making this website and chronicling my journey through neuroimmune conditions and their psychiatric consequences has been one of the most meaningful things I’ve ever done.

But I somehow could not bring this post in for a landing, which tends to happen when I feel like I have to post something rather than feeling inspired. So I stepped back and thought about what was going on. And now it’s time to be honest… Continue reading “My 6-Year Blogversary, My Greatest Hope, & What’s Next”

Guest Blog: The Challenges of Being a Teenager with a Chronic Illness, by Olivia Cyr

Today, I’m thrilled to have a guest blogger, Olivia Cyr. She is seventeen and lives with a few chronic conditions including dysautonomia, OCD, and anxiety. Olivia has been featured on The Mighty, and her perspective as a teenager dealing with these issues is important.


Being a teenager is hard. I don’t think that many would dispute that fact. Between boy/girl drama, friendship struggles, school, teachers, homework, a job for some, and more, teens often don’t get the credit they deserve for juggling all they have. 

Continue reading “Guest Blog: The Challenges of Being a Teenager with a Chronic Illness, by Olivia Cyr”

My Disastrous Symptom Flare & How I Plan to Get Out of It

Before I’d even opened my eyes, I knew something was terribly wrong. Every muscle in my body hurt. I was drenched in sweat. My heart was racing. I had an 101º fever.

As I lay there trying to will myself out of bed, my heart-monitor watch went off, warning of a high heart rate. I didn’t think much of it because I had a fever, so of course my heart would be above 100.

But then it kept going off. Again. And again.

Not having it, I rolled over and slapped on my blood pressure cuff. My pulse was 166. Crap crap crap! This was really happening again.

Continue reading “My Disastrous Symptom Flare & How I Plan to Get Out of It”

Remember M.E.: Why I’m Missing Today

Today was Graduation Day for my master’s degree…

But I’m not graduating.

And I don’t mean that I’m not getting an in-person ceremony, the same as the rest of the class of 2020. I mean that I’m not graduating because my illness forced me to leave grad school halfway through a degree.

For years, I had planned on going to grad school, getting a PhD, and then becoming a professor. I liked school and liked the tutoring job I had in college, so I thought teaching and researching at a university was what I wanted. Continue reading “Remember M.E.: Why I’m Missing Today”

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”

When Good Memories Torment You

The other night, a horrifying realization jolted me awake: I haven’t rode my bike in over two years.

Suddenly, the memories came rushing back, and I imagined myself biking like I once did. I remembered how, in college, I would bike to errands and class. I remembered zipping around town with the wind in my hair. I remembered the long rides in the bike lanes and on the greenway, and my riding buddy’s incredulousness when I’d already run ten miles that morning and still was hard to catch.

Continue reading “When Good Memories Torment You”