Tips for Schooling with EDS

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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For parents of children with a rare disease like Ehlers-Danlos syndrome (EDS), managing the disease and going to school can be challenging.

Here are a few tips to help:

File a treatment plan with the school

A treatment plan contains information about your child’s disease, what the treatments are, any side effects about which the school should be aware, and a list of your child’s medications. That list should state the medications’ dosage amount and when to take them.

Make sure you update the treatment plan after each doctor’s visit, whether or not it has changed. Also make sure that the school nurse is aware of the treatment plan and can administer any medication. Ensure that all contact phone numbers are up-to-date.

Inform teachers of any restrictions

Depending on the type of EDS your child has been diagnosed with, there may be specific restrictions about which teachers should be aware. For example, many patients are restricted from high-impact activities, like running and contact sports. Discuss with your child’s doctor what activities they should and should not be allowed to do, and discuss with the school what alternate arrangements need to be made. For example, some children may be able to take swimming instead of track.

Ensure special accommodations are in place

If your child has difficulty walking between classes in the time available, discuss rearranging their schedule with the school, or ensure accessibility accommodations. They school may have elevators that may allow your child to avoid stairs. If your child cannot carry their books, or needs extra time to get between classes, discuss what accommodations can be made available.

Discuss your child’s potential need for an IEP

Depending on the situation, your child may need an individualized education plan (IEP). For children with disabilities, an IEP lays out a plan for special education instruction, as well as the supports and services that the child needs to make progress and succeed in school. The plan should be reviewed between teachers and parents, and updated frequently.


Last updated: August 27, 2019


Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.


mom avatar


Suggestions please on how to deal with MCAS and exposure to fragrances in middle school and high school. e.g., we can't just ask one classroom teacher to not wear perfume. And the school district said that they won't accommodate such and that the child just needs to get used to dealing with the real world. Um, doesn't that just mean that they recommend home schooling and relative social isolation? Why do they have to have wheelchair ramps, but not have a fragrance-free policy?

Marley avatar


MCAS should be treated no differently than a peanut allergy.
Get the diagnosis and recommended restrictions (like no exposure to perfumes, exemptions from high-fume areas or classes) in writing from MD, ask for another IEP/504 mtg AND FOR A PARENT ADVOCATE TO BE PRESENT, and pitch a fit until they accommodate you. If it fails, contact your state Board of Ed and start pitching a fit there.

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