Going off to college is an exciting time, filled with new adventures and much more freedom, both personally and academically. However, it can also come with numerous challenges, particularly for students with Ehlers-Danlos Syndrome (EDS) and related conditions. On the positive side, increased independence means students with EDS may be able to manage some of their needs without formal accommodation requests. Even so, many students will benefit from arranging accommodations early to ensure they have support in place throughout their academic year.

Because EDS is often associated with a wide range of co-occurring conditions, needs can vary drastically from student to student. Common examples include Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Disorders (MCAS), gastrointestinal (GI) issues, migraines, or Autism Spectrum Disorder.

Not all of the accommodation ideas below will be relevant to every student. However, with this list, we hope it helps you identify supportive strategies that allow you to thrive.

Practical Supports That Often Don’t Require a Formal Accommodation Request

Below are some strategies you may be able to implement on your own. However, if you are unsure whether something would be permitted, it is best to contact your college’s Disability Services office and request a formal accommodation. Building good relationships with professors is also important, as they are often more willing to work with students they know are serious and proactive about their needs.

Helpful Tips to Know About College Classrooms or Campus 

• Unlike high school, college classrooms usually do not have assigned seating.
  • Arriving early can help you get a seat that works best for your needs.
• You are generally allowed to leave class briefly without asking permission but check exam policies ahead of time.
• Schedule classes strategically to allow time for rest, meals, medications, or dealing with symptoms between classes.

Personal Comfort & Symptom Management Tools

• Bring a portable air purifier for your dorm room, study space, or class if it is not disruptive.
• Wear a mask if allergens, illness exposure, or poor air quality worsen your symptoms.
• Use a slanted display stand or book stand.
• Bring a lumbar pillow or seat cushion to class.
• Wear earplugs or noise-reducing headphones if you are sound sensitive.
• Bring a mini portable fan or heating pad if temperature regulation or pain are an issue.

Movement Strategies in Class

• Sit near the door or another recommended area if you may need movement breaks during class.
• Prop your feet up during class or exams using a stool or leg rest.
• Sit during presentations or labs if standing for long periods worsens symptoms.

Food, Drinks, & Sensory Supports

• Bring water, electrolyte drinks, and snacks to class.
  • Some professors may restrict food or drinks during exams, so you may want to request this through Disability Services if needed.
• Wear sunglasses if you are light sensitive.
  • Most professors will not mind, but it is best to let them know ahead of time.
  • During exams or labs, you may occasionally run into academic integrity concerns.
  • If this becomes an issue, a private testing room accommodation may help.
  • Disability Services can help you determine the best solution for your situation.

Formal Accommodation Requests

When to Go Through Disability Services

You may think you do not need to register with Disability Services because you can manage without formal accommodations. However, all ‘spoonies’ know that our conditions can throw serious wrenches in our plans. It is best to cover all your bases and register so that you can hit the ground running with an accommodation when you need help unexpectedly. 

What To Include

Providing your college with a complete picture may make it easier to adjust accommodations later if needed.

• Include diagnoses that currently affect your academic functioning or daily living.
• Also include conditions that may require support if symptoms worsen or fluctuate over time.

How to Register

• Do not wait until the fall semester begins to request accommodations. Many students mistakenly submit paperwork in August, which can cause delays and prevent accommodations from being in place before orientation.
• Instead, start gathering paperwork for Disability Services as soon as you accept your admission offer. 
• Check your school’s Disability Services website for required student and medical forms. There is usually one form each for both you and your doctor to fill out.
• Coordinate with your doctors early:
  • Make sure they are willing or able to complete and sign the required forms on time.
  • Try to get documentation from the medical professional most knowledgeable about your condition.
  • Consider filling out your portion of the paperwork ahead of time to make the process easier. 

Formal Classroom Accommodations

For the following accommodations, you will need to go through the Disability Services office. A good test for whether you need a formal accommodation from the Disability Office is:

1. Is this something the school needs to provide?
2. Does this require modifications to standard classroom, testing, or housing policies?

If the answer to either question is “yes,” you will likely need a formal accommodation.

Be prepared for some back-and-forth during the accommodation process. If a request is not feasible as written, the school may offer an alternative. Keep an open mind while also advocating for yourself. If the alternative does not adequately address your symptoms or limitations, explain why.

 Attendance & Flexibility Accommodations

• Ask about remote learning options for flare days.
• Request attendance flexibility
  • Communicate proactively with professors and use attendance flexibility when you truly need it.
• Extended time on exams or assignments

Note-Taking, Recording, & Lecture Access

• Access to lecture notes and/or a note-taker
  • Helpful if writing is painful or fatigue affects attention.
• Permission to audio record lectures
  • Usually easier to get than a note-taker.
  • Schools may require you to sign a form agreeing not to share recordings.
• Access to slides or class materials before or immediately after class

Reading & Alternative Format Supports

• Alternative formats for print materials (digital scans or electronic text)
  • Many materials can simply be printed from the learning platform to eliminate eye strain.
  • If printing costs are an issue, ask Disability Services about printer access.
• Access to audiobooks or electronic books
  • Reduces carrying heavy textbooks.
  • Listening to textbooks or other materials may be easier, though text-to-speech can be a bit dry.
  • Some scanned PDFs may not work well with text-to-speech software. If this happens, talk to your professor or departmental assistant.

• Transcripts for video content
  • Helpful if videos trigger vertigo or symptoms from flashing lights.
• Advance notice for strobe, flickering, or flashing light content, or access to alternative media

Technology & Writing Supports

• Access to assistive technology and training
  • Includes voice activation, text-to-speech, and speech-to-text software.
• Speech-to-text software
  • May not require formal accommodations. Google Docs and other platforms offer free options. May still be helpful to request through Disability Services in case of cost or technical issues.

Classroom Environment & Physical Supports

• Ergonomic desk chairs
• Climate Control
  • If heat worsens your symptoms, you may need accommodations such as a cooler testing room, priority seating near ventilation, or permission to use cooling devices. This is not something you can usually fix the day of, so formally request accommodations early if needed.

Testing Accommodations

Testing Environment

• Quiet private testing environment

Time & Break Accommodations

• Extra Time
  • Schools may be reluctant without an ADHD diagnosis, but you can still advocate for it.
• Stop/Start Breaks
  • Some schools allow brief bathroom breaks during exams without accommodations, but policies vary.
  • Sometimes granted with extra time, sometimes not.
  • If unsure, request it formally through Disability Services.

Alternative Testing Formats

• Alternative exam formats
  • Helpful if screens trigger symptoms.

If Writing is Painful

• Dictation software or a scribe for exams may be helpful if writing is painful.
• Use of a laptop for exams

• Use of a calculator if brain fog is an issue

Ability to take medications during exams or classes

• It is usually not an issue, but formal approval can still help.

Flexible exam scheduling

• Helpful if symptoms are worse at certain times of day.
• Usually easier with private room or extended-time accommodations.
• Requests close to the original exam time are more likely to be approved.

Housing & Campus Accommodations

Housing Accommodations

• Single room
  • Helpful for sleep, temperature regulation, stress reduction, and more
• Private or semi-private bathroom to manage GI issues
• Centrally located housing to reduce walking/exertion
• Emotional support or therapy animal in campus housing
• Placement on an evacuation list for drills or emergencies if mobility or hearing is limited

Dining & Food-Related Accommodations

• Talk to dining hall staff about dietary restrictions
  • Many schools accommodate allergies and other conditions, such as celiac disease. 
• Meal plan exemption
  • May require housing with a kitchen or exemption from on-campus residency.

Mobility & Accessibility Accommodations

• Choose an accessible campus
• Access to elevators or elevator keys
• Accessible parking for commuters

Other Helpful Accommodations

• Priority registration
  • Some schools automatically provide this through Disability Services.
• Reduced course load
  • Check with Financial Aid and Disability Services first, as reduced credits may affect financial aid.

Final Thoughts

College should be challenging because of the work, not your disability. Advocating for yourself, building supportive relationships with professors, and using the resources available to you when needed can make a meaningful difference. Disability Services are there to support students and help ensure equal access to education. We hope this guide helps make the transition to college feel a little more manageable so you can focus on this exciting new chapter of your life!

Clare Tyler, Author

Law Student, POTSise

& Rare Disease Patient

Edited by Jacqueline Teti, Editor-in-Chief