Alexia’s Story

Alexia is a 22 year-old survivor from Los Angeles, California who, despite her battle with PANDAS, is currently working on finishing her bachelor’s in neuroscience and hopes to do research in the exciting field of neuroimmunology. While her interest in science was sparked by her experience with PANDAS, she isn’t shy of expressing how incredibly difficult her illness has made her life, as she had to “white knuckle” most of high school just to graduate. While past treatments have failed her, she is now seeing improvement for the first time after receiving IVIG.

What symptoms did you have, and which ones do you continue to experience?

“OCD, panic, general anxiety, fatigue, headaches, insomnia, [and] separation anxiety.”

Explain how PANDAS/PANS has influenced your personality and overall life experience. How have these symptoms impacted your life?

“My whole life has been impacted by PANDAS. Almost every choice I make is dictated by my health. I have had to stay close to home and have missed out on a lot and it robbed me of my childhood. The only positive impact pandas has had on my life (which is a stretch) is it has led me to my interest in science. I’m currently finishing my bachelors in neuroscience and hope to do research in neuroimmunology.”

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?

“Initially, it was just thought that my symptoms came about from the usually chemical imbalances and I was diagnosed with OCD, GAD, panic disorder, and separation anxiety. I tried countless medications and therapies which did not work. I also kept getting strep infections so I was constantly on antibiotics which too this day my stomach has never been the same. I also tried a bunch of homeopathic treatments. I was eventually sent to a specialist on New Jersey who diagnosed me with pandas and I tried steroids and more antibiotics which unfortunately again didn’t work. At 14 I spent over 3 months at a treatment center for teens with anxiety and OCD. I white knuckled most of high school, still trying new medications and also trying EMDR and TMS which didn’t work. Finally now, I am getting IVIG at the age of 22 which is finally helping with my symptoms. Though I haven’t found a medication that worked benzodiazepines help and so does exercise. I am lucky I got diagnosed relatively early however I still did not get proper treatment and had countless doctors tell me it was all in my head.”

Were you able to receive insurance coverage for your treatment(s)? How hard did you and your family have to fight to get coverage?

“For some yes but I know for the treatment center I went to extended family helped to pay. Luckily the IVIG I am getting now is covered though it took around 6 months to get that approved.”

What is the most valuable advice you can offer to others who are in the thick of their PANDAS/PANS symptoms?

“Not advice but having someone telling me it was not all in my head was helpful.”

What is your dream job and vision for your future?

“I have no clue. It’s hard to imagine my future when I still have pretty debilitating symptoms. I am going into a masters program for molecular microbiology and immunology and will probably go into biotech.”

Can you share any strategies or tools that have helped you manage or alleviate your symptoms?

“Exercise… [and] animals.”

Were there any particular moments or experiences that made you feel understood or supported during your journey?

“Any time I met someone else who was going through what I was going through which was not very common.”

Is there any specific moment or turning point in your treatment that gave you hope or made you feel like progress was being made?

“The day I got approved to start IVIG.”

How has living with PANDAS/PANS changed the way you view your own health or how you approach overall wellness?

“It made me realize how much we don’t know about the brain and health in general.”

How did PANDAS/PANS affect your relationships with family, friends, and peers? How did they respond to your diagnosis and symptoms?

“Most of my friends don’t know or just don’t understand. It’s a tricky balance because though I don’t think there is anything wrong with mental illness and think it is just as valid as physical illness there is still a stigma that I try to avoid and I don’t like explaining to people. I think this causes a barrier in most friendships. My mom is a therapist so she really understands mental health but I think it’s hard for her to understand that my symptoms are caused by other reasons. It’s hard to explain to family and friends.”

What do you wish people understood about living with PANDAS/PANS that they might not see from the outside?

“I just wish that it was a common concept that people understood. Like when someone says they have migraines or the flu how it’s a generally understood concept that people don’t think you are faking.”

Do you have a favorite book, movie, or TV show that helps you escape or relax?

“House, psych, the Pitt, Early seasons of greys anatomy.”

What’s your go-to comfort food or snack when you need a pick-me-up?

“Popcorn and chocolate chips.”

Alexia, thank you for your continued bravery and willingness to provide the full, honest picture of your experience with this brutal neuroimmune condition. You are loved, and we can’t wait to see you make breakthroughs on your health journey and highly advanced fields like neuroimmunology. From all of us at the NPYA, we love you. 💚