Frances’ Story
Frances is a 23 year-old PANS/PANDAS survivor with a master’s degree in criminal justice from Saint Joseph’s University. Unlike many people who are afflicted with these disorders, Frances’ onset was at the age of 20, but similar to many, her family has not received insurance coverage for medically-necessary treatment despite her diagnosis, and has paid out-of-pocket for all of her treatments. Below are direct quotes from her interview with the NPYA, detailing her journey and experiences with a neuroimmune condition.
Were you able to receive insurance coverage for your treatment(s)? How hard did you and your family have to fight to get coverage?
“We received no insurance coverage. All of the costs that we endured were out of pocket expenses. It's impossible to get anything covered by insurance, which then means if you can not afford thousands of dollars out of pocket, you are not able to get the critical treatment you need.”
What is your dream job and vision for your future?
“My dream job is to work in the field of intelligence and crime analysis under a federal or state agency such as the FBI, CIA, etc. Specifically, I want to work in the areas regarding International and Domestic Terrorism threats and extremist groups.”
Were there any particular moments or experiences that made you feel understood or supported during your journey?
“Meeting people my age with the similar condition. It allows me to feel so seen and heard, for something that's so difficult to explain to an outsider.”
What do you wish people understood about living with PANDAS/PANS that they might not see from the outside?
“How difficult the condition really is. Just because it isn't always necessarily a visible condition, does not mean it isn't debilitating. Trying to explain the neurological symptoms to people on the outside makes you sound crazy, even though it is your daily reality.”
What’s something about yourself that you’re really proud of?
“Finishing my bachelor's degree and challenging myself with my master's degree. After being diagnosed, I was so sick I didn't think I would be able to finish any type of higher education and now I have proved the PANDAS/PANS statistics wrong!”
Frances— from all of us at the NPYA, we thank you for your grit, determination, curiosity, and willingness to dig deep for what you really want in life despite everything you struggle with. Thank you for showing PANS/PANDAS youth what someone with a neuroimmune disorder is truly capable of. Congrats on graduating from Saint Joseph’s! We can’t wait to see how many criminals you can catch :)
Love,
The NPYA Team
