What every parent, student, and educator needs to know about learning with a connective tissue disorder.
Ehlers-Danlos Syndrome (EDS) doesn’t just affect joints—it impacts attention, mobility, fatigue, digestion, and more. Whether your child is in elementary school or you’re in college yourself, knowing your educational rights is critical for long-term success and well-being.
Students with EDS or related conditions are protected under federal laws that ensure equal access to education:
Provides accommodations to help students with disabilities fully participate in school.
Covers students who need special education services and an Individualized Education Program (IEP).
Protects against discrimination in all public and private schools (except religious institutions).
If your child has:
A diagnosed medical condition like EDS, POTS, or MCAS
Ongoing symptoms that interfere with focus, attendance, or physical function
A need for modifications to fully access learning
…they likely qualify for a 504 Plan. If they also need specialized instruction, they may qualify for an IEP under “Other Health Impairment” or “Orthopedic Impairment.”
You do NOT need an obvious physical disability to qualify. Chronic fatigue, GI distress, sensory overload, and pain are legitimate barriers to learning.
Here are examples of school supports that can be added to a 504 or IEP plan:
Extended time on tests and assignments
Reduced homework load or alternate assignments
Breaks during class or testing
Use of speech-to-text or audiobooks (e.g., Bookshare)
Flexibility with deadlines
Flexible arrival times (due to POTS or fatigue)
Reduced school day or part-time enrollment
Excused absences for flares or appointments
Virtual learning days during recovery
Homebound instruction when necessary
Use of mobility aids, braces, or ergonomic seating
Elevator access and permission to leave class early
Preferential seating near exits or away from distractions
Temperature or scent control (MCAS support)
Adaptive PE or alternative activities
Access to water, snacks, salt, and medications during class
Emergency plan for allergic reactions or MCAS flares
Nurse visits for vitals, hydration, or symptom management
Permission to use the bathroom as needed without restriction
OT/PT consultations within the school setting
Counseling for coping with chronic illness or school anxiety
Peer mentoring or aide assistance for mobility or note-taking
Request a meeting with the school’s 504 or special education coordinator in writing.
Provide medical documentation from your child’s doctors (include diagnosis, symptoms, and how it affects learning or function).
Work collaboratively to create a plan with the school team.
Review and revise annually (or sooner if needs change).
If you’re told your child isn’t eligible, or you’re denied accommodations:
You have the right to appeal or file a complaint with the Office for Civil Rights (OCR):
https://www2.ed.gov/about/offices/list/ocr/index.html
In higher education, the ADA and Section 504 still apply. But you must self-advocate.
Contact your school’s Disability Services Office before or during enrollment
Provide current documentation from your healthcare provider
Request accommodations similar to high school 504 plans
Examples: priority registration, note-taking services, reduced course load, flexible attendance, accessible dorms
Center for Parent Information & Resources
https://www.parentcenterhub.org
U.S. Department of Education – IDEA Overview
https://sites.ed.gov/idea/
Disability Rights Education & Defense Fund (DREDF)
https://dredf.org
School should be a place of access, growth, and support—not survival. With the right plan and people in your corner, students with EDS can thrive academically and emotionally. Don’t wait until burnout or crisis to ask for help. Start now. Advocate early.
And remember: You’re not a burden. You’re a blueprint for resilience.
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