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.
Although PANS symptoms can consume your entire day, the worst part is that the disease feels like it steals your very self from you, because it changes your whole personality. It’s affected every aspect of my life, physically, emotionally, mentally, socially, and spiritually.
I tell my story not because it’s exceptional, but because it’s too common…
When I was eleven, PANS turned my life upside down. I developed a mysterious illness (probably Lyme Disease or Rheumatic Fever) that seemed to go away on its own, but a few months later, I woke up as a different person with severe OCD and ADHD. I was never the same after that.
For the next eight years, I went from doctor to doctor trying to figure out what was wrong with me, as I had many strange symptoms and mental illnesses that seemed to come and go. Some of the diagnoses I accrued included OCD, Depression, Anxiety, Anorexia, ADHD, a tic disorder, and even Narcolepsy.
Just as it seemed like my problems were going away, my health began to deteriorate over the course of my freshman year of college. When I caught mono that spring, it triggered the worst PANS episode of my life, changing me from a highly motivated student full of dreams and aspirations, to a tormented being that couldn’t bear the thought of living another day. I suddenly developed wild involuntary movements all over my body. I couldn’t walk. I stopped eating, and I threatened to kill myself. Over a couple of weeks, I lost my mind.
Finally, I was diagnosed with PANS at nineteen, in 2014. I had two high-dose IVIG treatments in the months that followed, over a year of antibiotics and steroids, a tonsillectomy, and some therapy for what was left of my OCD, and I beat this disease into remission at the end of 2015. Unfortunately, I caught Lyme Disease a few months later, and I’ve not been able to come back from that.
At twenty-two years old now, instead of searching for jobs, I’m searching for treatment options. Instead of finding a lifelong partner or having a relationship, I’m just hoping I can find a doctor who can heal me. Instead of dreaming about where I’d like to live someday, I’m coming to terms with my imminent move back to my parents’ house once I graduate college.
I’m a straight-A student, full of promise in my field, making a name for myself, but I’m about to disappear and spend a year simply trying to get better. This is not where I wanted to be, or where I should be, at this point in my life.
What could’ve been if I were diagnosed eleven years ago?
What if my many doctors had known about PANS? What if I’d been given a simple antibiotic (the standard first-line treatment for PANS) when I initially became sick? Would I have spent my whole adolescence struggling with mental illness and learning challenges? Would I still be fighting this disease today? What life could I have had right now?
But then I realize I’m fortunate… Without a diagnosis and treatment, I could’ve spent the rest of my life with debilitating mental illness, and I never would’ve finished college, as I will in December—I may not have even seen my twentieth birthday. I’ve defied all odds, and the doctors who said I would never get better, and I have a much higher quality of life than I could’ve without treatment.
Despite my illness, I’m still accomplishing my dreams and doing things I never could’ve imagined when I’d hit rock-bottom. Even though I’m struggling right now, thanks to my diagnosis and treatments, I’m one of the lucky ones, because I know I will recover eventually.
My story will have a happy ending… Most like mine may not. We must change this.
Unfortunately, there are over 300,000 children and teens in America alone that suffer from this terrible disease, and most of them will never get a diagnosis. Most doctors remain devastatingly ignorant of this condition, misdiagnosing its sufferers with a plethora of problems, medicating them with psychotropic drugs indefinitely, and even sending them off to institutions. And yes, some people die from this disease due to suicide or the consequences of the eating disorders or impulsiveness that it causes.
With treatment, people with PANS can recover. My heart breaks for every person who is needlessly subjected to a lifetime of mental illness—or who will not survive to have any life at all—due to the lack of knowledge among doctors and the public. This could’ve been me.
Moreover, for those fortunate enough to be diagnosed, treatments like IVIG and plasmapheresis are often not covered by insurance. My family could afford what insurance didn’t cover (though we are still battling to get fully reimbursed), but too many children will go without treatment because their family cannot pay for it. In different circumstances, this too, could’ve been me.
I can’t change my past, and I can’t cure PANS, but I believe that if those of us who have been diagnosed and/or educated about PANS continue to raise awareness, we will change the outcome of countless lives. We will yet rewrite these stories, because we have the power to change what still could be.
Awareness can save lives!
Today, October 9th is International PANS/PANDAS Awareness Day. Will you join me on this quest to save lives through awareness? Will you take a moment to share this post? I, and anyone else stricken with this disorder, will be eternally grateful if as a result, even one person gets the help they need.
At least 1 in 200 kids have PANS… It is a treatable autoimmune disorder. Recovery is possible if treated early and appropriately.
For more information on PANS/PANDAS, please visit: