Charcot-Marie-Tooth disease (CMT) is the name given to a group of heritable conditions that affect the peripheral nerves. Peripheral nerves are those that transmit nerve signals from the brain to move muscles and carry sensory messages about pain, cold, heat, etc., from the rest of the body to the brain. Consequently, patients with CMT often experience progressive muscle weakness and loss of sensation.
The symptoms of CMT may begin while patients are still in school, so it is important for their caregivers and teachers to be aware of the accommodations they may require. Good communication between parents, teachers, and health professionals is important to ensure children with CMT successfully complete their education.
Every child is different and will have different physical needs, but some things may help all children with CMT and include:
- An additional set of textbooks so the child does not have to carry heavy books between home and school or between classrooms.
- Access to an elevator if classrooms are on multiple levels.
- Taking into account the child’s needs as much as possible when planning schedules.
- Taking into account the fact that a child with CMT may not be able to navigate some areas of the classroom when planning student seating.
- Taking into account the child’s limited mobility when putting in place emergency evacuation plans. A member of school staff should be assigned to accompany the child during an emergency.
- Taking into account the child’s needs when planning school trips, such as accommodation for people with disabilities, accessibility of the school bus, etc.
Children with CMT may have difficulty holding a pen or pencil. As a result, their handwriting may be sloppy or illegible. Pencil grips can help, but it also may be necessary for children to have additional time on tests and assignments, or be permitted to type their responses. For some children, speech-to-text software like DragonSpeak may be necessary.
Physical education and exercise
Modifications may be needed for physical education classes. It is important for parents and teachers to take into account the recommendations of the child’s physical therapist. In some cases, students with CMT may need to be excused from physical education.
Physical or occupational therapy may be required to ensure that students with CMT can navigate their school and maintain their independence.
Students with CMT may need exercises during the day, including:
- Range-of-motion exercises
- Safety training (on stairs and the playground)
- Accommodating activities of daily living to changing physical needs (toileting, lunchtime/cafeteria safety, etc.)
Some children may be more severely affected by CMT than others. It is important to coordinate with the school so they are aware if a child needs additional assistance. This may include:
- Dressing or changing for PE
- Carrying a lunch tray
- Help with practical (hands-on) lessons
- Additional supervision in case of falls during break times
- During transport to and from school
Charcot-Marie-Tooth 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.