I’m a 22-year-old Californian college student fighting an autoimmune disease affecting my brain called PANS/PANDAS. I also have Lyme Disease. I’m blogging about the healing process and all my misadventures along the way and doing my best to live life to the fullest!
My Story, in a Nutshell
I suffered from PANS for over eight years before my diagnosis in 2014, and it manifested as various neurological and psychiatric issues such as OCD, Depression, Anxiety, ADHD, Anorexia, Tourette’s Syndrome, and hypersomnia (misdiagnosed as narcolepsy, hence my blog’s name). My symptoms came and went over the years, and by high school, I’d made a good life despite my challenges.
But just as I seemed to be “outgrowing” my issues and had finished my first year of college, in 2014, I woke up one day with involuntary movements and became unable to walk.
Soon after, I essentially lost my mind, going through my days with an inexplicable mental torture too painful to convey in words. The world stopped making sense to me, and I never seemed to be completely awake. I had panic and rage attacks for no reason, sometimes running out of the house screaming and threatening to take my life. I felt trapped inside my thoughts, yet completely outside myself.
I’d gone from being a happy, straight-A student to being mentally, emotionally, and physically disabled in a matter of days. No medications seemed to help. My doctors threw up their hands and said they had no idea what was wrong with me.
And then I was diagnosed with PANS by an expert, and I began my long journey back to health.
Since 2014, I’ve endured multiple treatments: eleven IVIG infusions, months of antibiotics, over a year of steroids (both in pill and IV form), and a tonsillectomy. I’ve had times when I was in remission, but I’ve also suffered three major relapses:
- When my first IVIG “wore off” in early 2015. (I recovered by December.)
- When I caught Lyme disease in spring of 2016. (I recovered after a year.)
- For unknown reasons in the fall of 2017. And I’m still not better.
Nevertheless, while fighting these debilitating conditions, I’ve somehow had enough decent days, along with an iron willpower, a high-tolerance for suffering, and some good support, that have allowed me to stay in college. Not only this, but I’ve accomplished things I wouldn’t have dared to dream: I’m a star student and a nationally-recognized writer. Achieving all of this has been immeasurably difficult, but if all goes as planned, I should graduate in December of 2017!
I don’t know what my future holds. I don’t know how many more treatments I’ll need. I don’t know when/if I’ll ever get permanently better. But I do know that PANS doesn’t define me. It may have stolen many years and opportunities from me already, but I refuse to let it ruin the rest of my life. PANS has sent me on major detours and created seemingly insurmountable obstacles at times, but I cling to the dreams I had before I got sick, I push forward, and I tell myself that someday, somehow, I can still get to where I want to be.
Why the Blog?
I started this blog about PANS right as I was diagnosed in 2014. I was scared and overwhelmed, and I wanted to read about someone with PANS showing and telling me themselves that I would be okay. But back then, there was no other PANS sufferer blogging about their journey themselves—just parents blogging about their PANS kids.
I’m a writer… So why not start a blog and hopefully bring some hope and awareness to others someday?
Indeed, it’s a lonely road being a teen/young adult with PANS, so I wanted to let others know they weren’t alone. And I hoped that I could be a voice for the PANS kids too young to articulate their experiences.
As many as 1 in 200 children and teens have PANS, yet most doctors still don’t know enough to diagnose, let alone to treat it. Similarly, Lyme Disease has reached epidemic levels, yet so many doctors remain uninformed. I’m hoping that with more of us sharing our stories as I am, awareness will increase, and more people can get the treatment that they need.
I hope that my blog will be an encouragement and a source of hope. Will you join me for the journey?