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Rett Syndrome - FAQs

Q: Who treats Rett Syndrome?

A: A pediatrician is the one who will have to be first consulted. Other experts such as gastroenterologists, cardiologists, physiotherapists and geneticists will be involved in the management of Rett syndrome patients.

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Q: What are the chances of me having another child with Rett syndrome?

A: Most often, the condition arises as a result of sporadic mutation. The chances of a person with a Rett syndrome child having another one are less than 1%.

Q: Is Rett syndrome a degenerative disease?

A: Rett is not degenerative but a neuro developmental disorder. If complications and illnesses are taken care of, living up to adulthood is possible.

Q: What are the other conditions that should be ruled out?

A: Angelman syndrome, cerebral palsy, autism, neuronal ceroid lipofuscinosis must be ruled out while diagnosing Rett syndrome.

Q: What are the activities possible for a girl with Rett syndrome?

A: She will need help for most daily activities. Nevertheless, she can learn some skills that will make her independent – they include learning to use the toilet with assistance or feeding herself by using hand or utensils. She can learn to enjoy family and friends and can live well up to adulthood.


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