Yuji’s Story
Yuji is an incredibly active advocate and PANS survivor. She not only advocates on a national level for PANDAS/PANS research funding, but is also involved in state-wide social justice initiatives. While her journey has presented many setbacks, she uses them to become stronger and build character. Read more about her incredible story below!
How old were you when you first began experiencing symptoms of PANDAS or PANS, and which disorder do you have?
My serious symptoms started at the age of 14. My diagnosis is PANS.
What is the most valuable advice you can offer to others who are in the thick of their PANDAS/PANS symptoms?
The most valuable advice I can offer to others who are in the thick of their PANDAS/PANS symptoms is to take daily Epsom salt baths.* When I was very sick, I would take these salt baths, and they really changed my life.*
What is your dream job and vision for your future?
My dream job is to do something related to international relations building upon my current state and national social justice work. My vision for my future is to keep advocating for what I believe in, and to make the world a better place.
Have you found any resources or communities (online or in person) that have been helpful to you as someone with PANDAS/PANS?
This April, I met Kirk, Cat, Stephanie and Brandi during the National PANDAS/PANS Advocacy Days in Washington DC. It was helpful to meet others who have the same illness, and often symptoms, that I have had. It felt empowering to connect with people who know what it is like to have PANDAS/PANS. I look forward to becoming more involved in the National PANDAS/PANS Youth Alliance. It was awesome meeting everyone!
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 specific moment in my treatment that gave me hope was when I started Sub-Q IG treatments.* These treatments were much better for me because when I received more than one of my IVIG treatments in the hospital, my veins would collapse and my arm would become swollen. Now, I am doing weekly Sub-Q treatments at home. Because it is at home and not in the hospital, I am not missing the 2 days a month of school!
How did PANDAS/PANS affect your relationships with family, friends, and peers? How did they respond to your diagnosis and symptoms?
PANS has affected my relationships with my family, friends, and peers because at school I would act very strange (singing around campus, have OCD, and I would even be delusional). This scared a lot of my peers and made it hard to make friends. My family would often get called into school. My family supported me throughout my whole PANS journey. Every night, my mom stayed in the hospital with me when I was very sick. It's coming up on three years, and we each play different roles in my healing journey, working together as a team.
What’s something about yourself that you’re really proud of?
Something about myself that I'm really proud of is my advocacy work nationally and in the state of Maine. I am a Chinese adoptee and a National Act to Change Youth Ambassador. I authored a proclamation recognizing May 18th as AAPI Day Against Bullying and Hate in the city of Portland. Also, I authored and initiated the Joint Resolution for the state of Maine, that recognizes May 18th as AAPI Day Against Bullying and Hate.
Do you have a favorite music artist or song that helps you get through tough moments? My favorite music artist is Enhypen. I cannot choose just one song because all of their songs are so good!
If you could spend a day with anyone, living or not, who would it be and why?
If I could spend a day with anyone, it would be my Nana Iris. This January, she passed away. I was very close with her, so I wish I had one more day with her.
What’s your favorite hobby or activity to do when you’re feeling well?
My favorite activities to do when I'm feeling well are swimming, singing, dancing, and writing.
Any additional comments?
If you have read this far, join us in DC next spring for the National PANDAS/PANS Advocacy Days! Can't wait see everyone there!
Yuji, you are incredibly strong and brave, and are so happy that we will be seeing you again to advocate for PANS/PANDAS research funding in D.C.! We love you 💚
*The NPYA is a youth advocacy organization that is NOT qualified to give medical advice. Please consult a qualified healthcare professional before engaging in any treatment options, like epsom salt baths or sub-Q IG treatments, which were mentioned above.