Ageing with Rett syndrome: changes worth reviewing

New difficulties in an older person should not automatically be attributed to Rett syndrome or ageing. A change from the person’s baseline deserves assessment.

Key points to discuss:
- Watch for changes in mobility, endurance, swallowing, weight, sleep, bowel habits, seizures, breathing and pain behaviour.
- Review bone health, falls and fracture risk, dental care, vision and hearing.
- Reassess seating, hoists, bathing equipment and pressure care as body shape and function change.
- Consider menstrual transition and menopause where relevant.
- Preserve communication, preferred activities and social connection alongside medical care.
- Keep future-care wishes and emergency information current within the local legal framework.

Sources:
- Consensus care guidelines: https://pmc.ncbi.nlm.nih.gov/articles/PMC7488790/
- The Kids Research Institute Rett resources: https://rett.thekids.org.au/resources/

Important: This post provides general information, not individual medical advice. Care and treatment must be personalised by qualified healthcare professionals. If you are worried that someone is seriously unwell, use your local urgent or emergency service.