Maya’s Story

Maya just finished her freshman year of college at the University of Maryland, and advocates with the Tourette Association of America and the NPYA. Her journey is marked with countless ups and downs, from not being capable of speaking for nearly an entire year, to speaking on Capitol Hill in front of senators and representatives for PANS/PANDAS research funding. Throughout her tumultuous battle with autoimmune encephalitis, the little wins kept her going, as she emphasizes how when she received steroids during the timeframe in which she was unable to speak, she found herself “able to say a couple of words… [and] these couple of days showed me that recovery was possible.” The following text features direct quotes from Maya during her interview with the Alliance.

How old were you when you first began experiencing symptoms of PANDAS or PANS, and which disorder do you have?

“I was 12 years old when I first began experiencing symptoms of PANS.”

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

“My very first symptom was nerve pain in my ear, followed soon after by tics. Since then, I have experienced a whole range of symptoms including anxiety, depression, OCD, tics, seizures, inability to speak, walk, or use my hands, food restriction, heightened senses, handwriting decline, dilated pupils, and many more.”

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

“It's impacted my life in so many ways. I feel like I have not had a fully "normal" experience since middle school. Because of PANS I have missed out on so much, but at the same time, I have made so many good friends and really found a calling in advocacy work. This is the first year, as a freshman in college, that I am getting to do something that other people my age would consider typical, and it is really meaningful to me.”

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 originally diagnoses with anxiety, OCD, Tourette Syndrome, Functional Neurological Disorder, and non-epileptic seizures. It took me almost 3 years to get diagnosed. That time was really frustrating because I was being told that therapy would solve all of my problems, but I was doing therapy and getting sicker daily. It was really hard to advocate for myself when I was so sick. Thankfully, the people in my life were accommodating so I was able to manage my daily needs with my symptoms even before I had a diagnosis, but the diagnosis was what helped me to finally get effective treatment.”

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

“My advice would be to allow yourself to grieve the person you thought you would be. It can be hard when you feel you need to act / be a certain way because it's what you expect of yourself, and it made me sad to realize that I would never be that person, but it helped me a lot to realize that the person I am now is just as amazing, just in a different way.”

What is your dream job and vision for your future?

“I would love to teach special education. I have known since I was in elementary school that I wanted to be a teacher, but it wasn't until I started to struggle in school that I became drawn towards special ed.”

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

“Well, the main thing that helps me are my Rituxan infusions. I've had at least 15 over the past 3 years. Antibiotics, steroids, and NSAIDS also help me. Outside of medication, therapy has been helpful. I did CBIT for my tics, as well as OT, PT, and CBT, which are all helpful in different ways. Besides that, I've found it helpful to find things I enjoy doing because they distract me from my symptoms. For example, when I play any musical instrument, I do not experience tics.”

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

“I think for me, getting to share my story and meet other people like me really helped me to feel understood. Also, on the rare occasion that someone I talk to has heard of PANS / PANDAS, it feels really validating. Usually, I will have to explain what the condition is to every single person, so it is nice when I don't have to.”

Have you found any resources or communities (online or in person) that have been helpful to you as someone with PANDAS/PANS?

“Yes! I am part of the [National PANDAS/PANS Youth Alliance], and I have also done Advocacy Day with NAPPA / The Alex Manfull Fund. I am also involved with the Tourette Association of America, and I do advocacy work with them. These are all groups of amazing people who are turning their challenges into lasting impact and change to help others.”

How do you explain PANDAS/PANS to others who may not be familiar with the condition?

“PANDAS / PANS are both types of autoimmune encephalitis. Autoimmune means that your body is attacking itself, and encephalitis means brain inflammation. In PANS / PANDAS, the immune response to an infection attacks the brain rather than the infection. This misdirected immune response causes the brain to become inflamed. When the brain is inflamed, it cannot function properly, which is what leads to symptoms.”

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 first time I got steroids was the first time I felt hope. I was able to say a couple of words, after being entirely nonverbal for four months. Even though a few days after steroids, I lost the ability to speak for the next 8 months, these couple of days showed me that recovery was possible, and I held onto that. Another moment is the first time I got to go to Capitol Hill and share my story.”

How do you handle setbacks in your recovery or moments when symptoms flare up again?

“I handle setbacks by reminding myself of the progress I've made, connecting with friends in the PANS / PANDAS community, and giving myself time to rest.”

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

“I have started viewing my health, and many things in my life as temporary. I am able to better understand that the bad days will not last, but on the downside, I now focus a lot on how the good days will also not last.”

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

“All of my close friends and family were really supportive from when I initially started experiencing symptoms. When I was diagnosed, they made a point to learn about the condition and what it meant for me, as well as ask me questions about my experience. My relationship with my peers changed though because they viewed me as less capable and intelligent and it was hard to fit in with them.”

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

“I wish that people understood how much of an impact PANS / PANDAS has on a person's life. On top of the symptoms we experience, there is also the fighting with doctors and policymakers to get treatment, lack of knowledge and awareness and even people flat out saying that these conditions don't exist, and side-effects of treatment.”

What do you want other kids or teens experiencing PANDAS/PANS to know about their journey?

“I want people to know that it is possible to live a fulfilling life while having PANDAS / PANS. I want people with PANS / PANDAS to understand just how strong and incredible they are, and to give themselves grace on their difficult days.”

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

“Goldfish!”

What’s something about yourself that you’re really proud of?

“I am proud of myself for finishing high school and now starting college. Specifically, I am proud that I continued to show up and to do my best, even when my best wasn't what I wanted it to be.”

What’s your favorite hobby or activity to do when you’re feeling well?

“I love reading, writing poetry, playing violin, and jumping rope!”

Wow. That brought us to tears. Maya, your resiliency, tenacity, and continued fight despite debilitating symptoms is powerful to say the least. We are honored to be working with a change-maker like yourself. More than anything, we want to thank you for being you, Maya. From all of us at the NPYA, you’re incredible and we love you 💚

Maya with the Baltimore PANS/PANDAS Awareness Day Proclamation that she got passed :)