Which Doctors Treat Rett Syndrome?

Rett syndrome is a rare genetic condition that primarily affects girls, according to the Rett Syndrome Research Trust. This neurological disorder typically starts in early childhood, often after a period of typical development. Many children lose previously gained skills, such as speech and purposeful hand use.

Because Rett syndrome can affect many parts of the body, children usually need care from a multidisciplinary team of healthcare professionals. Symptoms may include:

• Speech and communication problems
• Balance and motor difficulties
• Seizures
• Breathing irregularities
• Gastrointestinal and feeding issues
• Autistic features
• Heart rhythm abnormalities

Rett syndrome is a spectrum disorder, meaning symptoms and severity can vary from person to person. There’s currently no cure, so treatment focuses on symptom management.

Building a coordinated care team can help support your child’s health and development — and provide you with guidance as a caregiver. Here are some of the many healthcare providers who may be involved in treating Rett syndrome.

Treating Rett syndrome is complex, so having a coordinated medical team on board is essential. Finding a doctor with experience in Rett syndrome can help ensure your child receives comprehensive care. These specialists often work within established networks and can refer you to other providers to address your loved one’s specific needs.

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On MyRettTeam, people share their experiences with Rett syndrome, get advice, and find support from others who understand.

Which doctors are part of your Rett syndrome care team? Let others know in a comment below.