No matter which type of Ehlers-Danlos syndrome (EDS) children may have, the disease’s specific symptoms can affect all aspects of their everyday lives — including schooling.

EDS is the name given to a group of 13 different disorders that affect the connective tissue, which gives structure and support to joints, blood vessels, and tissues. Most people with EDS — of all types — have soft, fragile skin and joint hypermobility, in which joints bend further than they should, leading to dislocations and damage.

Children with EDS are likely to need accommodations to assist in minimizing the syndrome’s effects on their education and schooling.

Individualized education plans

Parents should work with the school administration to develop an individualized education plan (IEP) for their child with EDS. The IEP outlines what resources and services the child will need and what accommodations the school will provide.

For many EDS patients, the accommodations needed will be quite simple: children with EDS should not carry heavy book bags, for example, and may need to have an alternative physical education class.

Accommodation recommendations for schools

Schools may need to provide special arrangements to ensure that students with EDS are not at a disadvantage at school. These may include offering physiotherapy consultations as needed to evaluate the child’s needs at school, reducing the need to carry heavy textbooks, and alternate physical exercise (PE) classes that do not include high-impact activities.

Other accommodations also may be needed. Some EDS students should not play wind instruments, for example, or other instruments such as the violin, which may place too much strain on the joints.

Children with EDS need sun protection as exposure to the sun can make patients’ skin more fragile.

Other accommodations that may be needed include:

  • rest periods in the middle of the day to reduce fatigue
  • two sets of textbooks — one for home, one for school — to avoid carrying heavy loads
  • adjusted chair and table height
  • help with note-taking, and extended time for tests and assignments

All staff in a school attended by a pupil with EDS should be made aware that a medical emergency, such as a dislocated joint, may occur. School staff should be informed about what action to take in such a situation.

It can be challenging to meet the needs of children with EDS without making them feel that they have been labeled different from their peers. It is important to ensure that these students are able to lead as normal a life as possible.

Additional resources for parents and educators

The Ehlers-Danlos Society offers resources to help parents and schools to ensure children with EDS perform well at school. These resources include continuing liaisons between home and school to ensure educators and staff understand the child’s condition and the required modifications for fair performance in studies.

 

Last updated: Nov. 5, 2019

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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.

Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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