Duchenne | and you

Why Education Is So Important


School teaches children independence, provides them with opportunities to learn and helps them meet friends – skills that will enrich their entire lives.

Adjustments at school

You can divide support networks into both formal and informal types—and you should make use of both:

Most children with DMD can attend pre-school and primary school without any problems. However, as the condition progresses, some adjustments may need to be made.

It is important that you contact the school and provide them with as much information as you can about DMD.

That way the teachers can:

  • Provide special equipment
  • Arrange transport to and from school
  • Adapt the curriculum to the individual
  • Monitor any needs throughout the school year
  • Offer extra support for any learning or behavioral problems
  • Provide additional time for schoolwork
  • Be flexible with attendance
  • Educate other students about DMD (with your permission)

Talking to teachers – where to start

Request a kick-off meeting

with the members of staff who will be involved in your child’s education.

Openly discuss

any concerns, special needs or ideas you may have.

Provide information

about DMD and the treatments/therapies your child is receiving.

What does the school need to know?

The needs of a student with DMD may be very different from those of other children. Be sure to tell the teacher whether your child:

  • Needs classroom accommodations, like space for a wheelchair
  • Requires tutoring or special education
  • Needs assistance getting around, eating, or going to the toilet
  • Has any emotional or behavioral problems
  • Needs to bring adaptive equipment to school
  • Needs to take medications during the school day
  • May need special considerations about lateness and missed classes and/or homework
  • Is open about discussing DMD with classmates, other parents, and other teachers

Common assumptions to rethink about DMD at school

If your child has DMD, the thought of sending them to school can be daunting. You may worry about them falling, being bullied, or going through the unnecessary stress of exams and other assignments.

While it is perfectly normal for parents, caregivers, teachers and even the child with DMD to have fears around school, it is important to understand that they are not always based on reality.

Separating fact from fiction can make a huge difference in helping your child get the best educational experience possible.


Because my child has DMD, they will be better off in special education


While you may think that a DMD diagnosis means attending a special education program, if possible, children with DMD should attend mainstream schools. This is so that children with the condition can experience and learn from the ‘real world’.

However, keep in mind that things can change. As the disease progresses, an alternative or specialized school that can support the needs of your child may be your best option.


Because my child has DMD, they should not participate in school activities or trips


Having DMD does not mean that your child cannot participate in school activities.

Openly discuss your child capabilities and limitations with the school. Together, you can decide whether any modifications or special adjustments need to be made. (For example, building ramps for wheelchairs, providing more time for exams, or finding games that do not require physical strength.)


My child will be teased or bullied about DMD


Talk to the school about how to raise the topic of DMD with other students. Research has shown that children are less likely to tease and more likely to defend a student with DMD when they understand the condition.

To help teachers discuss DMD in the classroom, refer them to Parent Project Muscular Dystrophy’s resources for teachers here.


The teacher will know exactly what to do


This may or may not be the first time your child’s teacher has had a student with DMD in their classroom. Be prepared to openly discuss your child’s condition and provide teachers with guidance and information about DMD.

To help inform teachers about DMD, refer them to Parent Project Muscular Dystrophy’s resources for teachers here.


My child will not be able to keep up with their classmates


While it is true that children with DMD may need assistance with physical activities and help to address learning disabilities, they can still follow the classroom curriculum and participate in class activities.

Rather than focusing on the disability and what the student cannot do, focus on what the student can do. Work with your child’s teacher to set realistic goals and focus on the student’s strengths. You could also talk to the school about developing an individualized educational program (IEP).

More resources

To help teachers understand DMD and meet child’s needs in the classroom, refer them to Parent Project Muscular Dystrophy’s resources for teachers here.

To learn more about how to talk to teachers and school staff, look at Parent Project Muscular Dystrophy’s ‘Education Matters’ guides, here.


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Date of preparation: September 2022

Important Terms and Concepts

Basic terms and key definitions

Neuromuscular disorders

Neuromuscular disorders affect the muscles and nerves, and most of the causes are genetic. This means they are either passed down through the family or caused by changes in an individual person’s genes.

Most neuromuscular disorders cause muscle weakness that worsens over time. Signs and symptoms of neuromuscular diseases can vary and may be mild, moderate, or severe.

Most often, when a child has a neuromuscular disease, they don’t grow and develop as fast as other children their age. They are often slow to start lifting their head, sitting, walking, and talking.

Treatment and supportive care may improve the symptoms of a neuromuscular disorder, increasing mobility and even life expectancy.

Muscular dystrophy

Muscular dystrophy is the term for a group of neuromuscular disorders that cause muscle weakness and muscle loss.

Duchenne muscular dystrophy (DMD) is a type of muscular dystrophy that causes muscle weakness that worsens over time. The progression and symptoms can vary from person to person.