Emily’s Story
For years, I was given many diagnoses by multiple medical providers none of them were correct. It wasn’t until December 2022 that I finally received the answer I had long suspected.
I was born on June 25, 1990, and raised outside of Philadelphia, PA alongside my twin sister by two loving parents. My early development was typical I was a happy, curious, and engaged child. However, beginning in toddlerhood, I experienced frequent strep throat infections, often multiple times each season from fall through winter. These infections continued into elementary school.
At age seven, my life changed dramatically. I developed sudden and severe anxiety, including intense separation anxiety that deeply concerned my parents. Although I continued progressing through school, my symptoms followed a waxing and waning pattern.
In fifth grade, I was diagnosed with mononucleosis, which coincided with a strep infection and unknown to me at the time Lyme disease. Following this illness, my anxiety became overwhelming. I also developed debilitating OCD-like symptoms that began to take over my daily life.
This pattern continued into middle school. By eighth grade, my symptoms had intensified to the point where they significantly interfered with my ability to function. I was physically exhausted, unable to keep up academically, in field hockey, and consumed by fear due to my OCD symptoms. My academic performance began to decline. From that point forward, my life changed.
I began what would become years of searching for answers moving from doctor to doctor, desperately trying to understand what was happening to me. Instead of answers, I received multiple misdiagnoses and treatments that failed to address my condition and, in some cases, caused additional health complications.
Because my symptoms presented as anxiety and OCD, they were repeatedly treated as primary mental health conditions. While mental health care is essential and valid, in my case it did not address the cause. What was being missed was that my symptoms were not purely psychiatric, they were the result of an underlying medical condition driven by a dysregulated immune response.
My life became a revolving door of appointments, confusion, and frustration. Most importantly, I was never given the correct diagnosis or appropriate care.
As I got older, I knew something wasn’t right. The diagnoses I had been given never fully explained all of my symptoms. Determined to find answers, I began researching on my own. Before long, I came across information that closely matched my experience. I continued to educate myself and sought out specialists who might validate what I had come to believe.
In December 2022, I met with a specialized neurologist, who carefully listened to my history and my parents’ account of my childhood. He confirmed what I had suspected for years: I had been living with PANDAS since around age seven. I was also diagnosed with autoimmune encephalitis.
PANDAS—Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections is an autoimmune condition in which a misdirected immune response attacks the brain following a strep infection, leading to the sudden onset of severe neuropsychiatric and physical symptoms.
It is critical to understand that while PANDAS symptoms often resemble psychiatric disorders such as anxiety or OCD, the underlying cause is fundamentally different. PANDAS is rooted in immune system dysfunction and neuroinflammation, not a primary mental health disorder. Without recognizing this distinction, patients risk being misdiagnosed and treated in ways that do not address the true cause of their illness.
With encouragement from my father and my physician, I explored the possibility of filing a medical malpractice lawsuit due to years of misdiagnosis, delayed diagnosis, and unnecessary suffering. My attorney worked tirelessly conducting extensive research and consulting with experts. Ultimately, due to the difference in the standard of care between the 1990s and early 2000s, as compared to today, a case could not be confidently pursued.
While that was disappointing, there is hope in how far awareness has come. Today, PANDAS is more widely recognized, and more children are receiving timely diagnoses and appropriate, medically targeted treatment, something that brings me great peace.
Today, my PANDAS and autoimmune encephalitis are in remission and well managed. I am healthy and thriving. I also manage an autoimmune thyroid condition, Hashimoto’s, and prioritize both my physical and mental wellbeing.
Emily is a PANDAS and autoimmune encephalitis survivor and advocate. She is dedicated to raising awareness, supporting research, and educating medical professionals on the critical need to differentiate immune-mediated neuropsychiatric conditions from primary mental health disorders so that no child or young adult loses years of their life to a treatable condition.
Emily holds an Associate degree in Interior Design from Harcum College and a Bachelor’s degree in Human Development from Temple University. She is the owner of a small business that provides concierge senior downsizing, move management, and aging-in-place services for adults 50 and older. In her spare time, she enjoys exploring art and architecture, antiquing, weekend getaways, exercise, and trying new restaurants. She resides in suburban Philadelphia with her partner, Eric, an attorney.