I’m a 22-year-old college student living with an autoimmune disease affecting my brain called PANS/PANDAS, as well as late-stage (chronic) Lyme disease. I’m blogging about the healing process and doing my best to live life to the fullest along the way!
My Story, in a Nutshell
I suffered from PANS for eight years before my diagnosis in 2014, and it manifested as various neurological and psychiatric issues such as OCD, ADHD, Anorexia, Tourette’s Syndrome, and hypersomnia (misdiagnosed as narcolepsy, hence my blog’s name). Just as I seemed to be “outgrowing” my issues, in 2014, I woke up one day with involuntary movements and became unable to walk, and soon after, I essentially lost my mind. Finally, on the verge of psychosis, I was diagnosed with PANS and began my journey back to health.
Since 2014, I’ve endured multiple treatments: three high-dose IVIG infusions, months of antibiotics, over a year of steroids, and a tonsillectomy. I’ve had times when I was in remission, but I’ve also suffered two relapses, the second of which was triggered when I caught Lyme disease in 2016. In 2017, I’m doing so much better than I once was, but I still have a long way to go.
Why the Blog?
I started this blog around the time of my PANS diagnosis in 2014, and back then, as far as I know, there was no other PANS sufferer blogging about their journey themselves—just parents blogging about their PANS kids. 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 who were too young to articulate what they were going through.
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, awareness will increase, and more people can get the treatment that they need.