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A Survivor's Story: Lucy's Story 

March 26, 2022

The Honorable Dr. Richard Pan

1021 O Street, Suite 7320
Sacramento, CA 95814

RE: PANS/PANDAS Insurance Coverage Legislation 

Dear Senator Dr. Richard Pan:

My name is Lucy and I am a PANDAS survivor and now advocate who resides in your district. PANS/PANDAS (Pediatric Acute-onset Neuropsychiatric Syndrome/ Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are aptly described by many as a nightmare come to life. Parents lose their children in the span of 24-48 hours to severe symptoms of regression, OCD, hallucinations, tics, and more. I myself was rushed to the hospital in 2016, where I spent about a month as my medical team tried to figure out why I suddenly saw and heard things that weren’t there, refused to eat or drink, and lost quite a bit of cognitive and motor function. I was a straight-A student, popular in school, I played sports. Overnight, I was labeled as a threat to myself, assigned 24/7 safety monitors within my hospital room, and underwent just about every test imaginable. CT scans, MRI’s, blood tests, spinal taps, everything came back negative. I was put on antipsychotic medications, which did nothing to alleviate symptoms, other than put me in a zombie-like state. Daily my parents and I endured threats from the hospital that I would be transferred soon to an inpatient psychiatric hospital as my condition continued to decline. My parents were the true heroes in my story. They knew that this wasn’t me, and advocated for me. They spent every waking moment researching my symptoms, looking for anything that could explain what was happening. They suggested more tests, convinced my medical team not to transfer me, begged for answers. One day, they found it. One disorder, albeit rare and fairly newly discovered, in which I checked every single box. PANDAS- all that was missing was a strep test. This was the one and only test that came back abnormal- my strep titer was extremely high, suggesting I had strep within the past several weeks. It was clear I had PANDAS, but then came the next step- an official diagnosis, and treatment. We saw doctor after doctor who refused to diagnose me, who claimed PANDAS was “made up by parents who don’t want to accept the psychological disorders their children have.” Finally my parents were able to get a doctor to diagnose me with PANDAS and prescribe me antibiotics. Shortly thereafter, the symptoms went away. I ate again, I didn’t have obsessive compulsions, I didn’t have hallucinations, I was back to normal. I now write this having since then established a nonprofit at 16, graduated from the University of California with honors in 2.5 years, and am now preparing for graduate school at 20. Aside from the PTSD that’s come from my experience having PANDAS, my life went back to normal. I am so unbelievably lucky and blessed to be able to say this, for my story to have such a happy ending. Every single letter of impact you read regarding this legislation will tell a similar story of the tragedy of parents losing their children overnight. The difference is, their happy endings haven’t come yet. You can change this. So many of these parents, these heroes have been fighting to get their children back. Fighting for answers, fighting for diagnoses, fighting for treatment, and fighting for coverage. On behalf of all of the children and young adults who have and will have PANS/PANDAS and their loved ones, please help us make our bill a law. 

Sincerely,

Lucy 

Sacramento, CA

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