About this profile
Rett Syndrome is a rare genetic neurological disorder that predominantly affects girls. It leads to severe impairments in motor function, communication, and cognition after a period of normal early development. Common features include loss of purposeful hand use, slowed growth, and seizures.
Watch and listen
Common challenges
- Limited fine motor skills for tasks like typing or assembly
- Communication difficulties that affect interactions
- Seizure management and need for medical supervision
- Fatigue and physical stamina limitations
- Sensory sensitivities to light, sound, or movement
- Need for frequent breaks or position changes
How to help
- Identify supported or highly structured roles matching abilities
- Coordinate with therapists to develop communication aids
- Advocate for on-site medical support and emergency planning
- Recommend adaptive technologies for communication and tasks
- Support fatigue management through flexible scheduling
Notes
Rett Syndrome is progressive and requires ongoing adjustments as needs change. A highly supportive and predictable environment with appropriate therapies maximises participation and quality of life.
October is Rett Syndrome Awareness Month