Hailey’s Story
Hailey is a 19 year-old who has just finished her sophomore year at Elon University, making the Dean’s List in the process. However, it took a lot of struggle, perseverance, and an incredibly strong will to get her to where she is today. At the young age of 13, she began suffering from PANS, which continues to impact her daily life. Below are direct quotes from Hailey during her interview with the Alliance.
Explain how PANDAS/PANS has influenced your personality and overall life experience. How have these symptoms impacted your life?
“PANS has made it hard to socialize as much. I’m so tired all the time now and that makes it harder to make friends and do things I want to do.”
Walk us through your medical experience. How many times were you misdiagnosed, how long did it take for you to get correctly diagnosed, and how did you navigate all of this while experiencing your symptoms?
“I was in inpatient psychiatric treatment for a total of 2 years from the ages of 13-16 until I got diagnosed with PANS. It was frustrating when things wouldn’t work.”
Were you able to receive insurance coverage for your treatment(s)? How hard did you and your family have to fight to get coverage?
“Yes, they had to have lots of phone calls and lots of paper work but eventually they helped.”
What is the most valuable advice you can offer to others who are in the thick of their PANDAS/PANS symptoms?
“Just hold on. Ride it out, there really isn’t much to do. Just know this is temporary and you will have good days.”
What is your dream job and vision for your future?
“Stage manager or lighting designer.”
Can you share any strategies or tools that have helped you manage or alleviate your symptoms?
“I love co-directing PANS Courage. It’s a place that I started with as a member and still feel a part of the community even as a co director. It’s a safe space to talk about anything and it makes me feel seen, and normal for a little bit.”
Were there any particular moments or experiences that made you feel understood or supported during your journey?
“On PANS Courage calls and talking to my best friend from the calls. I’ve made connections that are so strong. I found someone who feels like me in another font, we match each other like we are the same.”
How do you explain PANDAS/PANS to others who may not be familiar with the condition?
“It’s a brain inflammation thing.”
Is there any specific moment or turning point in your treatment that gave you hope or made you feel like progress was being made?
“When I got to college I felt like I was going to be okay.”
How do you handle setbacks in your recovery or moments when symptoms flare up again?
“I just get back up and try again.”
Do you have a favorite book, movie, or TV show that helps you escape or relax?
“SNL [Saturday Night Live].”
What’s something about yourself that you’re really proud of?
“I made dean’s list last semester.”
Do you have a favorite music artist or song that helps you get through tough moments?
“Sonya alone (don’t judge).”
If you could spend a day with anyone, living or not, who would it be and why?
“Phoebe [PANS Courage Co-Director] because I miss her and we need to hang out again because she is my other half.”
What’s your favorite hobby or activity to do when you’re feeling well?
“Watch SNL and knit.”
Hailey, thank you for all that you do for the PANS/PANDAS community. From co-directing PANS Courage, a remarkable support group for teens and young adults, to sharing your story with the world, you have made an incredible impact on the survivors of these disorders. From all of us at NPYA, thank you 💚
