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[RETT-1] Rett Syndrome: What People Don’t See

MyHealthTeam

Created on March 9, 2026

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Transcript

What people see

Slowed growth

Loss of motor abilities

Epilepsy

Loss of communication skills

Repetitive hand movements

Behavioral changes

Abnormal breathing

Cognitive impairment

Unusual eye movements

Scoliosis

Weakened bones

Digestive problems

Sleep disturbances

Depression

Abnormal heart rhythm

Cold hands and feet

Anxiety

What people don’t see

Depression

People with Rett and their families may experience depression.

Digestive problems

Constipation, incontinence, and gastric reflux are common with Rett syndrome.

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Slowed growth

Head growth slows first, followed by other parts of the body.

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Cognitive impairment

People with Rett may have trouble thinking, understanding, or learning new things.

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Behavioral changes

Crying, screaming, laughing, hand-licking, and grabbing hair or clothes are common.

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Repetitive hand movements

Purposeless hand movements include wringing, tapping, squeezing, or clapping.

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Anxiety

Anxiety may make it difficult to function socially.

Loss of communication skills

People with Rett experience gradual or sudden loss of the ability to talk.

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Abnormal heart rhythm

Changes in heart rhythm can be serious and may increase the risk of sudden death.

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Scoliosis

Rett syndrome includes an increased risk for a sideways curvature of the spine.

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Weakened bones

Weak bones raise the risk for fractures.

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Loss of motor abilities

Development slows or stops, and then motor abilities are gradually lost.

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Abnormal breathing

People with Rett may hold their breath, breathe rapidly, or forcefully blow out air and saliva.

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Sleep disturbances

Irregular sleep patterns include stopping breathing or waking in the night crying or screaming.

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Unusual eye movements

Rett syndrome eye movements can include staring, blinking, closing one eye, or avoiding eye contact.

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Epilepsy

Multiple types of seizures are possible with Rett syndrome.

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Cold hands and feet

Problems with circulation may cause cold extremities.

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