Living with PANDAS and Seizures

I was born with many health problems that will affect me for the rest of my life. One of them is a bad immune system. I have always had every infection possible, and it’s very rare for me to go one week without having some infection. I am on a first-name basis with the urgent care staff.  

When I was 13, I got strep throat. I thought it was just another infection, and I moved on. But two days later, I woke up with severe neurological symptoms. However, I was too confused to be seriously worried or scared, as I was experiencing cognitive decline.  

I was diagnosed with PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections), an infection in my brain caused by a subspecies of strep. I recovered from the initial symptoms, but since then, I have had to learn to cope with likely permanent brain damage, which caused my epilepsy. 

Almost no one knows about PANDAS. It is such a devastating disease, and it seems like every parent’s worst nightmare for their child, so I don't think people talk about it because it is uncomfortable. I am sharing my story to educate people on what PANDAS is and what it is like to live with it. I want people to know there can be long-term effects like seizures.  

My seizures were terrifying and traumatizing, and I was bullied, even sometimes by teachers and school staff. Dealing with medical PTSD (post-traumatic disorder) has been very hard for me, and seizures contributed to that. I first tried therapy for PTSD, but it only worsened my situation. I found out that the best thing to help me was to form a strong support system. I started making friends and getting jobs, which helped improve the day-to-day symptoms of PTSD I experienced. 

I want people to know that it is okay to be angry and it is okay to feel all the emotions. It’s not fair that people have to deal with diseases like epilepsy. Never beat yourself up for feeling upset because of your diagnosis. It’s better to confront and talk about your feelings than to avoid them and gaslight yourself.