School and Loeys-Dietz Syndrome: Guidance for Families, Educators, and Students

6 min. read

How can students and families with Loeys-Dietz syndrome (LDS) prepare for school? What should educators know about students with LDS?

As the school year approaches, LDS families have questions.

Keep reading to find answers and:

• A new, informative LDS School Packet;
• Accommodations for students with LDS;
• Information about LDS and neurological conditions that may impact a student’s ability to succeed at school – including neurodevelopmental challenges, learning difficulties, attention deficit disorder (ADD), and attention deficit hyperactivity disorder (ADHD);
• Resources for bullying;
• Tips for transitioning to college.

Didn’t find the answer to your question about LDS and school? Call our LDS helpline at 1-888-LDS-FCAN or email us at info@loeysdietzcanada.org.

A New School Packet!

Our Loeys-Dietz Syndrome School Packet is here! The Packet shares detailed information on LDS and school-related accommodations, guidelines for exercise and more, emergency information, forms, and resources. If a student has Loeys-Dietz syndrome, relevant information should be shared with their school staff.

The School Packet aims to foster a safe, educational, and social school experience for students with Loeys-Dietz syndrome. How? By providing relevant LDS information, by outlining potential scenarios and plans, and by encouraging collaboration between families, educators, medical professionals, and community members.

To create this updated, comprehensive School Packet, we gathered information from as many resources as possible, including from the Loeys-Dietz Syndrome Foundation (US).  

To access the LDS School Packet, click here.

General Accommodations for LDS and School

What is an academic accommodation? At school, students with disabilities may experience barriers that limit or prevent them from learning, socializing, and participating safely in activities. Accommodations help to minimize or eliminate those barriers. To watch a video describing academic accommodations, click here.

Keep reading to learn about some of the most common accommodations for students with LDS, or visit our LDS School Packet to find a more complete list of accommodations.

Individualized Education Plan

Many provinces and territories promote inclusion in schools through Individualized Education Plans (IEPs). An IEP identifies a student’s specific learning expectations and outlines how the school will address these expectations through accommodations, program modifications and/or alternative programs, and strategies for learning and assessment.

To access sample IEPs, click here.

Exercise Restrictions

LDS exercise restrictions often aim to reduce the amount of stress placed on the heart and arteries. Exercise that causes a sustained elevation of heart rate or blood pressure or that brings any muscle group to exhaustion should be avoided in people with LDS. It is important that these restrictions are communicated to all school staff that have contact with an LDS student.

Orthopedic Concerns

For students with scoliosis or other orthopedic concerns, carrying a heavy backpack can have negative consequences. To limit the amount of weight they carry, students may want to use a rolling backpack or have an extra set of textbooks to leave at home.

Students with loose joints might experience joint pain and/or fatigue and need accommodations such as more time for test-taking, shortened assignments, the option to submit oral responses rather than written, and access to a computer for note-taking (typing may be more efficient and less painful than writing by hand).

Allergies

Allergies have been a reported problem for people with Loeys-Dietz syndrome. Parents should talk with school staff about their child’s allergies and restrictions, and about what to do if their child is exposed to an allergen.

As a result of allergies, a student may have gastrointestinal complaints and need easy and/or more frequent access to bathrooms. Depending on the student’s gastrointestinal symptoms, they may also be easily fatigued and need rest periods throughout the school day.

Neurological Conditions and LDS

People with Loeys-Dietz syndrome may experience neurological conditions such as neurodevelopmental challenges, learning difficulties, attention deficit disorder (ADD), and attention deficit hyperactivity disorder (ADHD).

Neurological Conditions and School

Neurological manifestations can impact a student’s ability to succeed at school, and students may need to be evaluated by a professional and receive accommodations.

For students taking medication, it is important for healthcare providers to be aware that some stimulant drugs used to manage neurological conditions may not be recommended for people with Loeys-Dietz syndrome and/or heart conditions.

Are Neurological Conditions Common in LDS?

Current research is divided on how often neurological conditions appear as a result of Loeys-Dietz syndrome. There is a need for further research on this topic.

A 2008 review of LDS, authored by Dr. Loeys and Dr. Dietz and updated in 2018 described developmental delays and learning disabilities as rare characteristics of LDS.

Conversely, a 2018 study by Collins II et al. was based on community-reported data and found that neurodevelopmental difficulties are common in people with LDS.

Collins II et al. defined neurodevelopmental difficulties as:

• Issues with gross motor development, coordination, cognition, learning, speech and language, hearing, vision, or feeding;
• A psychiatric diagnosis (of anxiety, depression, learning disability, attention deficit hyperactivity disorder (ADHD), etc);
• The use of therapies such as occupational, physical, or speech therapy.

LDS participants in the Collins II et al. study commonly reported neurodevelopmental difficulties of low muscle tone, motor delays, and a need for therapy. 22% of participants reported being diagnosed with learning disabilities, and 19% with ADHD.

Bullying

Bullying is unwanted, aggressive behavior that involves a real or perceived imbalance of power. The behavior is repeated, or has the potential to be repeated. There are three types of bullying: physical, verbal, and social.

Children who experience bullying are more likely to exhibit depression, low self-esteem, poor eating, exhaustion, school avoidance, lowered grades, hard time concentrating, and a higher chance of dropping out of school. 

According to the Canadian Survey on Disability (2017), 42 per cent of youth with a disability have experienced bullying at school because of their condition. This increases to 62 per cent among those with a more severe disability. Children with LDS may be victims to bullying, even when LDS may seem like an invisible illness.

There are ways to prevent bullying. Anti-bullying campaigns, teaching children what to do, validating feelings, offering guidance counselling, and protecting your child’s legal rights can help minimize bullying and provide an appropriate and supportive environment for students.

To find a bullying support service in Canada, click here.