My name is Emma. I have been diagnosed with PANDAS, and several tick-borne infections. My journey began abruptly three years ago during what I call my first “episode.”
I was a typical tween hanging out with some friends on a Friday night, when suddenly I developed visual and auditory hallucinations. I was thrown into a state of panic, sweating, dizziness, and numbness in my limbs. Sadly, this marked the last day I would feel like myself for the next several years. I encountered these episodes frequently without any warning and with no ability to control them. I worried about the long term effects on my brain and body from a condition I knew nothing about.
Doctors put me through a barrage of testing that left me with no clear answers. Depression, anger, and confusion set in with each uncertain medical opinion. My parents, desperate to seek answers, took on the financial burden to pay for testing and treatments. During this time I struggled with school work, friendships suffered, and I started to lose passion for the things I loved, especially dance. I found it difficult to express my feelings to family members, school faculty, and peers because I didn’t have a medical diagnosis. It was a lonely, exhausting battle where symptoms changed daily, adding to my already weakened state. I was hurting on so many levels.
After extensive research, and with the continued help of many individuals, we began hearing words like PANDAS, PANS, strep, microplasma, tick-borne illness, co-infections, MTHR, chronic inflammation. We slowly unpeeled these layers that had plagued me for years. Now I am on a path toward healing. Slow, cautious, and hopeful that this next chapter takes me to a place where I can mend both physically and emotionally.
As a PANDAS warrior, I see the urgency for research. A prompt diagnosis and appropriate immediate treatment is critical in preventing long term impairment. I want to find a way to help our community. In an effort to assist those similarly afflicted with the hope of combating the effects of this condition, I have partnered with P.A.N.D.A.S. Network to create a fundraising awareness project.
The idea behind this project was to design a T-shirt, bringing visibility to P.A.N.D.A.S while also using this as a way to raise money for research and treatment . For me, the arts, particularly dance, has helped the healing process. Visual imagery can often express an emotion when words fail. My hope is to expand this project to include other childhood conditions, enable future fundraising, and create a safe place where our expression is understood.