Audri’s Story
Audri has lived with PANS/PANDAS ever since she was a toddler. From debilitating symptoms to countless misdiagnoses, she’s experienced just about every setback someone with a neuroimmune disorder can experience. However, Audri continues to fight and recover with the help of IVIG and a sense of willpower that is beyond extraordinary. She’s an incredible human who loves to pole vault on her collegiate track and field team, skateboard, and be outside. Audri’s a fighter, and an inspiration to us all.
How old were you when you first began experiencing symptoms of PANDAS or PANS, and which disorder do you have?
“I was a toddler when I first experienced symptoms but I wasn’t diagnosed until I was 8 years old. I originally had PANDAS but then it turned into PANS after I got Lyme disease when I was 10. I also had Lyme when I was a baby.”
What symptoms did you have, and which ones do you continue to experience?
“It started with OCD, sensory issues, rage, anxiety, depression, derealization, dilated pupils, loss of math skills. I currently experience anxiety, depression, rage, derealization, depersonalization, OCD, loss of math skills, and dilated pupils.”
Explain how PANDAS/PANS has influenced your personality and overall life experience. How have these symptoms impacted your life?
“I have never really known what life is like without PANDAS/PANS. I experienced it at such a young age that it has impacted who I am today. I was in and out of hospitals and doctors most of my life so I never really got to be a kid and hang out with friends and go to school. I missed a lot of school because of PANDAS and had to stay back a year. PANS has really changed my life and how I see the world. It has been a really long struggle that I am continuing to fight now as a young adult.”
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?
“Before I was diagnosed at age 8 many doctors diagnosed me with behavioral issues, and psychiatric conditions. I was put on so many psych meds at such a young age and it caused me to have chronic akathesia which is the most debilitating symptom for me. Luckily my parents were very supportive and fought to find answers and a diagnosis. I wouldn’t be here without their help.”
Were you able to receive insurance coverage for your treatment(s)? How hard did you and your family have to fight to get coverage?
“The first IVIG I ever got I had to pay out of Pocket. We got insurance to cover the rest when I was ages 8-18. But we had to fight and submit many appeals throughout the years and it took a long time to get the treatments. I am no currently getting IVIG again but I am only getting half the dose because that’s all insurance will cover. Even though I have a history of getting better after IVIG treatments we still have to fight insurance.”
What is the most valuable advice you can offer to others who are in the thick of their PANDAS/PANS symptoms?
“You are stronger than you think. You may feel so alone and helpless but you will not feel this way forever. There is hope.”
What is your dream job and vision for your future?
“I am majoring in film production in college and I hope to work on the film industry.”
Can you share any strategies or tools that have helped you manage or alleviate your symptoms?
“Allowing myself to take rest days. Even though it makes me feel guilty and unproductive I know that it is what my body needs.”
Were there any particular moments or experiences that made you feel understood or supported during your journey?
“When I was 8 years old and got diagnosed I truly felt like the Doctor understood.”
Have you found any resources or communities (online or in person) that have been helpful to you as someone with PANDAS/PANS?
“Over the years I have been apart of Facebook and Instagram groups for kids with PANDAS/PANS.”
How do you explain PANDAS/PANS to others who may not be familiar with the condition?
“I tell them that when I get sick my antibodies go crazy and fight the infection but continue to fight and don’t know when to stop, therefore attacking my brain and causing inflammation.”
Is there any specific moment or turning point in your treatment that gave you hope or made you feel like progress was being made?
“In 2021 I got IVIG when I hadn’t had it for a few years and I did a complete 180. I wasn’t able to go to school and I slept most of the day but when I got IVIG within the next week my life changed I was able to go back to school. I joined the track team and tried pole vaulting for the first time. I had never done track before so it was something new. I had a great year and I felt the best I ever had in my whole life.”
How do you handle setbacks in your recovery or moments when symptoms flare up again?
“I try to take it day by day. Setbacks can be so devastating especially when you were doing well. I try to give myself grace and do the things that make me happy.”
How has living with PANDAS/PANS changed the way you view your own health or how you approach overall wellness?
“I realized that unfortunately doctors don’t always have the answers and know how to help. I learned many ways to help myself over the years whether it be supplements and vitamins, diets, saunas, infrared lights, or meditation. I gone through lots of trial and error.”
How did PANDAS/PANS affect your relationships with family, friends, and peers? How did they respond to your diagnosis and symptoms?
“I didn’t have many friends when I was in middle school and high school because I was always in and out of school. I lost… friends along the way as well. I sometimes have a hard time relating to others my age because I still feel stuck. It can be very hard to be around me for my family when I’m flaring. I feel guilty because when I’m flaring I’m not myself.”
What do you wish people understood about living with PANDAS/PANS that they might not see from the outside?
“That everyday is a fight from the moment you wake up to the moment you fall asleep. Even if you don’t actively see people with PANS looking sick they are constantly battling to survive each day.”
What do you want other kids or teens experiencing PANDAS/PANS to know about their journey?
“Everyone’s journey with PANDAS/PANS is different. It’s hard not to compare your journey with someone else’s and want to be where they are at. But you have to remember it’s a rollercoaster and you may feel better and [then] worse and then better and etc.”
Do you have a favorite book, movie, or TV show that helps you escape or relax?
“For many years I have loved the show Stranger Things. When I was younger I felt like I could relate to eleven because I grew up much differently than other kids my age and had a lot of setbacks that others didn’t understand. I also felt like the kids on Stranger Things were my friends when I was younger because I didn’t have any.”
What’s your go-to comfort food or snack when you need a pick-me-up?
“I love drinking tea when I need a pick me up.”
What’s something about yourself that you’re really proud of?
“Competing on a track and field team in college. I have only been able to do one semester of college because I have been in a bad flare for the past year and had to withdraw. But I’m hoping to get back this fall.”
Do you have a favorite music artist or song that helps you get through tough moments?
“Fleetwood Mac is definitely my favorite band and makes me feel good when I listen to it.”
If you could spend a day with anyone, living or not, who would it be and why?
“I would love to spend a day with Stevie Nicks. I have loved her music for a long time and to be able to hang out with her would be so cool!”
What’s your favorite hobby or activity to do when you’re feeling well?
“I love being outdoors and being active. I pole vault on a college track team. I love hiking, swimming, biking, skiing, wakeboarding, skateboarding, and just being outside. I also like filmmaking and film acting.”
