College with PANS/PANDAS: Your Story Matters
Starting college can be challenging for any young adult. For students living with PANS/PANDAS, the transition often comes with added layers—managing health, navigating accommodations, advocating for support, and figuring out how (or whether) to explain a complex condition to others.
We recently shared an ASPIRE article, Navigating College Accommodations for Students with PANS/PANDAS by Karolyn Ormond outlining college accommodations and legal protections for students with PANS/PANDAS. Now, we’re taking the next step by inviting lived experience into the conversation.We’re building a new resource focused on real college experiences from young adults with PANS/PANDAS and their families.
If you are a young adult with PANS/PANDAS or a parent or caregiver of a young adult, we invite you to share your PANS/PANDAS college story.
Your experience can help other families feel less alone, better prepared, and more confident as they navigate this stage.
Please email stories to info@aspire.care
What We’re Hoping to Learn From You
You can share as much or as little as you’re comfortable with. Some prompts to consider:
Accommodations & Supports
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What academic accommodations were most helpful (e.g., flexible attendance, extended time, reduced course load)?
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Did you work with your college’s disability or accessibility office? What was that process like?
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Were accommodations easy to obtain, or did you face challenges or delays?
Advocacy & Planning
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What do you wish you had known before starting college?
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Did you register early with disability services, or later after challenges arose?
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Were there supports you didn’t think to ask for but later realized would have helped?
Medical & Therapeutic Care
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If you attended college far from home, did you arrange care with a local medical or mental health provider?
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What worked well (or didn’t) when transferring care?
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How did you manage flares or health setbacks during the semester?
Living on Campus
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Did housing accommodations matter for your health or recovery?
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What helped with routines like sleep, meals, and managing stress?
Talking About PANS/PANDAS
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How did you explain PANS/PANDAS to friends, roommates, professors, or advisors—if you chose to share?
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Were people receptive or understanding?
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What language or explanations worked best for you?
Social & Emotional Experience
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What was hardest about college while living with PANS/PANDAS?
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What helped you feel supported or grounded?
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What advice would you give another student starting this journey?
Why Share Your Story
Many families tell us that college feels like a cliff—full of possibility, but also fear. Real stories help bridge that gap.
By sharing your experience, you can:
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Help other students advocate for the supports they deserve
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Normalize the realities of living with PANS/PANDAS in college
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Highlight what actually helps—beyond policies and checklists
Guidelines
- We don’t need to use names at all in order to preserve anonymity. This choice is up to you.
- Pictures are not required but appreciated
- Stories should be 1500ish words or less.
- Stories should not include doctor’s names. Please include what kind of doctor you saw, i.e., immunologist, pediatrician, naturopath, etc.
- The Personal Stories section is neither a platform to sell any products or a type of therapy nor one to discredit a doctor or institution.
- ASPIRE has the discretion to publish a story or not and will edit for fundamental typos and grammar. ASPIRE may request that you provide additional information as needed.
5 tips for writing about your PANS PANDAS
- Write as if you are talking – Stories work best when they are conversational. Use words you would usually use.
- Don’t be afraid to share the difficult parts. It can be daunting to share experiences that have been challenging, but describing them could help others going through similar things. You might be able to help others by sharing how you coped with your experiences, and what support helped you (whether from friends, family, a patient organization or support group).
- Stick to specific events rather than writing about everything you have been through. It is generally more impactful to focus on a significant period of your life.
- Describe how the events or obstacles have made you feel. It is easier for readers to relate to feelings than objective descriptions of events.
Gabriella True
