Conditions & syndromes · England
Understanding Rett syndrome
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Rett syndrome affects people in different ways.
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What it means
Rett syndrome affects how the brain develops.
It mainly affects girls and women.
Boys can be affected too.
Some children lose skills they learned earlier.
A specialist can explain assessments and tests.
Communication matters
Speaking or moving your hands may be difficult.
This does not show everything you understand.
People should give you time to respond.
Looking at pictures or using eye gaze technology may help you communicate.
Ask for help to find what works for you.
Your choices matter.
Health and comfort
Ask which health checks you need.
Tell a health professional about new pain or changes.
Ask what to do in an emergency.
You may need help to move or sit comfortably.
Ask for advice about equipment and bone health.
You may need support to eat and drink safely.
Tell someone if eating or going to the toilet is difficult.
Support through life
Support continues in adult life.
Ask who will organise your care.
Make time for people and activities you enjoy.
Rett UK has information and support for you and your family.
Families can ask for practical and emotional support too.
What you can do next
Ask for a care plan that fits your needs.
Ask people to help you communicate your wishes.
Find information and support from Rett UK Web pageThis link opens another website.
It may use harder words.
More useful links
- NHS: Rett syndrome Web page
An overview of possible effects, diagnosis and support.
- Rett UK: support services Web page
Information and practical support for individuals and families.
- Rett UK: communication Web page
Ways to support communication, learning and involvement.
- Rett UK: transition to adulthood Web page
Resources to help prepare for adult life and services.
- Rett syndrome health checklist Web page
Detailed clinical information to discuss with the health team. It does not replace an individual care plan.
These links open other websites.
They may use harder words.
Rett syndrome
Understand Rett syndrome, communication, individual health care and support through childhood and adult life.
Children and adults · England · General information
What Rett syndrome means
Rett syndrome affects brain development and can cause complex physical and communication difficulties. It mainly affects girls and women, although boys can be affected. It is usually linked to a change in a gene called MECP2. Most cases arise as a new genetic change rather than being inherited. The effects and support needs vary. A genetics specialist can explain the result and any implications for the family.
Getting the diagnosis explained
Children may lose previously learned skills, such as speech or purposeful hand use. This is called regression. The timing and pattern vary. Specialists consider the child's development, examination and symptoms alongside genetic tests. A genetic result needs clinical interpretation; a test that does not find an MECP2 change does not always rule out Rett syndrome. Ask the GP or existing specialist about assessment and who will explain the findings.
Support communication and learning
Apraxia means difficulty turning an intention into an action. It can make speech, pointing or responding very difficult. Limited movement or speech does not show everything a person understands. Speak directly to them in an age-appropriate way and allow time to respond. Ask a speech and language therapist about communication assessment, including eye gaze, picture-based choices or partner-assisted scanning, where someone offers choices in turn. Support learning and conversation beyond basic care needs.
Make an individual health plan
Care may involve seizures, breathing patterns, heart rhythm, sleep and pain. Ask which checks are needed, who will arrange them and how to recognise changes. Unusual movements or episodes are not always seizures, so the team should assess them carefully. Keep an agreed emergency plan and current medicine information available. New or worsening symptoms need assessment rather than being assumed to be part of Rett syndrome.
Movement, posture and bone health
A physiotherapist and occupational therapist can advise on comfortable positioning, movement, equipment and daily activities. Ask about checks for spinal curvature, hip problems and bone health. Plans should reflect the person's abilities, comfort and goals. Ask for reassessment if movement changes or care becomes painful. Supporters need training in agreed techniques; equipment and exercises should be individually assessed.
Eating, drinking and bowel comfort
Some people have difficulty chewing, swallowing or maintaining their weight. Ask for a swallowing and nutrition assessment when needed. A speech and language therapist and dietitian can help plan suitable support. Constipation and reflux can also cause discomfort. Report concerns and follow the individual care plan. Changes to food texture, drinks or feeding methods should be agreed with the relevant professionals.
Plan for adult life
Many people with Rett syndrome live into adulthood. Plan the move from children's to adult health and care services early, with a named contact and clear handover. Include communication, relationships, activities, equipment and the person's own choices in the plan. Review support when needs change. Ask who will coordinate ongoing health reviews and help prevent gaps between services.
Support for the person and family
Rett UK offers information, family support and help with communication. Its transition resources can help families prepare for adult services. Ask about practical assistance, breaks from caring and emotional support where needed. Keep communication information available to new staff and professionals. The person should be included in conversations and have opportunities to express preferences, enjoy activities and spend time with people they choose.
Words you could use
“Please help us understand the health checks needed, find effective ways to communicate, and plan support around this person's own wishes.”
More useful links
- NHS: Rett syndrome Web page
An overview of possible effects, diagnosis and support.
- Rett UK: support services Web page
Information and practical support for individuals and families.
- Rett UK: communication Web page
Ways to support communication, learning and involvement.
- Rett UK: transition to adulthood Web page
Resources to help prepare for adult life and services.
- Rett syndrome health checklist Web page
Detailed clinical information to discuss with the health team. It does not replace an individual care plan.
These links open other websites.
They may use harder words.
Where the information comes from
Links checked 9 November 2026.
These links open other websites.
They may use harder words.
- NHS: Rett syndrome Web page
Variable presentation, assessment, eating and drinking support, treatment and adult life.
- Evelina London: Rett clinic Web page
Genetic basis, regression, boys and girls, and specialist multidisciplinary care.
- Rett UK: diagnosis Web page
Clinical assessment and interpretation of genetic testing.
- Rett UK: communication Web page
Accessible communication, learning and avoiding assumptions about understanding.
- Rett syndrome communication guidelines (PDF) PDF
Apraxia, response time and ways to access communication when hand use or speech is difficult.
- Evelina London: Rett clinic referrals Web page
Specialist assessment of breathing, communication, feeding and episodes that may not be epileptic.
- UK Rett syndrome health checklist (PDF) PDF
Individual health monitoring, pain, bone and movement needs, and assessment of new symptoms.
- Rett UK: transition to adulthood Web page
Planning support and services through the move to adulthood.
- Rett UK: support services Web page
Family support, practical advice and links with health, education and care services.