Preparing the School for Your Child With Ehlers-Danlos Syndrome

Helping children with Ehlers-Danlos syndrome succeed and stay safe

Teacher With Parents
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Teachers can be great allies in keeping your child with Ehlers-Danlos syndrome safe and successful in school, but you'll need to make sure they have all the knowledge they need to help. What important things should you share with your child's teacher before the school year begins?

In order to best understand what teachers should know when teaching a child with Ehlers-Danlos syndrome it's helpful to first review the basics of the condition as well as the symptoms.

What is Ehlers-Danlos Syndrome (EDS)?

Ehlers-Danlos syndrome (EDS) is not a single syndrome, but rather a group of conditions which affect connective tissue such as the skin, bones, cartilage, tendons, blood vessels, and more.

Ehlers-Danlos syndrome is a hereditary condition related to a gene mutation in one of more than 12 genes involved in the formation of connective tissue in the body. Some forms are autosomal dominant and others are autosomal recessive. EDS can also arise due to new mutations in people without a family history of the disease.

It's important to note that there is a wide spectrum of symptoms which may occur in people with EDS. Some people are diagnosed quickly as young children, whereas others are unaware of the syndrome until they become adults. EDS can be as mild as "loose joints" (which can be an "advantage" in gymnastics) or severe enough to be life-threatening.

Symptoms of Ehlers-Danlos Syndrome

The symptoms of Ehlers-Danlos syndrome may include:

  • Overly flexible joints (joint hypermobility): In lay terms, this may be referred to as "double-jointedness." Due to hypermobility, dislocations are common.
  • Stretchy skin that may be soft or velvet-like in texture.
  • Fragile skin: The skin may tear easily and often is difficult to suture (stitch). Lacerations are also more likely to result in a scar.

    Types of Ehlers-Danlos Syndrome

    There are six major subtypes of Ehlers-Danlos syndrome, with some of these broken down yet further into different syndromes. The most common subtype of EDS is hypermobility, and primarily affects joints. More serious subtypes include "vascular" disease in which blood vessels may tear, sometimes with catastrophic results. Fortunately, these more serious variants are less common. While easy bruising is more common in the vascular subtypes, it may occur with any form of EDS.

    Things Teachers Need to Know

    There are several important things that teachers should know in order to help a child with Ehlers-Danlos syndrome stay safe and succeed. We will talk about some general points if you have a child with EDS in your class, but it's important to sit down with the child's parents and learn about their concerns. Every child with EDS is different, and parents may have specific concerns which aren't mentioned in general information about the syndrome. What should you know about children with EDS?

    Some Physical Activities Can Be Dangerous

    Physical activities can be dangerous due to both hypermobility and fragile skin. Some physical activities should be avoided as loose joints can put these children at risk of dislocations.

    Activities that are more likely to result in a dislocation include contact sports and those that cause rapid twisting or bending, such as racquet sports. Even within a subtype of EDS, the severity of symptoms vary, so it's helpful to ask the child's parents about specific activities that might be encountered in gym class or on the playground.

    Writing Can Be Difficult

    It's sometimes easy to forget that fine-motor activities can be just as challenging as whole-body activities. Writing, in particular, can be difficult for children with EDS. This problem of pain with using a pen or pencil, in turn, impacts a child's ability to take notes, write essays, or stay up to speed on tests.

    There are many things teachers can do to help children struggling with wrist and hand pain due to writing. Sometimes it may be a simple as adding pen grips. For other children, typing on a notebook or iPad may be easier than writing. Another option that has helped some children is to provide a note-taker; either a student who is willing to take notes or notes that you as a teacher can provide.

    The type of writing can make a difference as well, and sometimes either printing or cursive is easier. Switching back and forth between these, however, may present a challenge.

    Most important, perhaps, is to allow a child the extra time needed to write while taking tests or completing in-class homework.

    Frequent Absences May Occur

    Children with EDS often have frequent absences, whether due to chronic pain, injuries, or the fatigue which is so common. Obstructive sleep apnea is very common, affecting roughly a third of children with EDS, and if untreated can result in extreme daytime fatigue. It's very helpful to work with the child's parents to keep her up-to-date on assignments while at home.

    Bruises and Skin Tears Are Common

    In a society in which we are now very alert to the possible presence of child abuse, it's important to understand that bruises and skin tears are common in children with EDS. If you have a child in class and have felt concern about seeing bruises or skin tears, keep in mind that what might be concerning in a child without EDS may be normal in a child with EDS.

    Books Are Heavy

    A common difficulty for children with EDS is carrying heavy books to and from school. Books are heavy! There are several remedies which can help with this. Sometimes, providing a child with a set of books to keep at home in addition to a set at school can reduce this concern. If it's necessary for a child to carry books between classes, you could assign the child a buddy to help. Using an online version of a textbook is another option.

    Discussing the Diagnosis With Other Students

    Children are curious and often have questions about a student who cannot participate in certain activities or requires special assistance (such as more time to complete a test). Before you talk to other students, make sure to ask your child's parents what they are comfortable with you sharing. Many parents appreciate the gesture to bring their child's classmates up to speed as long as it is done in an appropriate and simple way.  Ask the child as well what her preferences are. Some children do not want other children to know they are "different" and it's important to respect that. Other children, in contrast, might be relieved if you let other children know what she is coping with.

    Be Aware of the Child's Emotional Needs

    EDS can cause significant emotional distress for children, and limitations at school can add to this distress. Talk with the child's parents about any special concerns they have. When a child with EDS is left out from an activity, think of ways of replacing the social aspects of that activity with something else. Ask what has helped a child feel involved and part of a group outside of the classroom.

    Open Communication Is Essential

    Open communication between home and school is extremely important for a child with EDS. These children need all of the adults in their lives working together. If you have questions or uncertainties, it's always best to ask.

    A Word From Verywell

    Ehlers-Danlos syndrome is a spectrum of conditions which involve hypermobility (loose joints), fragile skin, and sometimes other problems. If you will be having a child with EDS in class, it's important to work closely with her parents to find ways to help her be both successful and safe. Fortunately, simple measures such as avoiding contact sports, providing more time when writing is painful, and helping a child stay up on her studies despite absences, can go a long way in ensuring both her safety and success in school.

    As a final note, if you note that a child in your class appears to have hypermobility and has any of the characteristics mentioned earlier, talk to the child's parents. EDS is estimated to affect 50,000 people in the United States, and 90 percent of these people go undiagnosed until they have a medical emergency which needs attention.

    Sources:

    De Baets, S., Vanhalst, M., Coussens, M. et al. The Influence of Ehlers-Danlos Syndrome—Hypermobility Type, on Motherhood: A Phenomenological Hermeneutical Study. Research on Developmental Disabilities. 2017. 60:135-144.

    Kliegman, Robert M., Bonita Stanton, St Geme III Joseph W., Nina Felice. Schor, Richard E. Behrman, and Waldo E. Nelson. Nelson Textbook of Pediatrics. 20th Edition. Philadelphia, PA: Elsevier, 2015. Print.

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