Rett Syndrome

Newly Diagnosed

Getting the diagnosis of Rett syndrome is difficult, but there are many people who are willing to help you, beginning with IRSF. Here are a few places to start.

About Rett Syndrome

Rett syndrome is a unique developmental disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys.

Living with Rett Syndrome

The goal in selecting the right educational or day program setting for your child should be to provide her with the most stimulating program in the least restrictive environment, taking into account each child's own special needs and personality.

Family Support

FamilyMatters is a series of topical questions posed to various IRSF online Rett communities by the IRSF Family Advisory Board (FAB). Our goal is to tap into the vast wisdom of parents and caregivers who most often are the best resource for solutions to the practical, common, day-to-day issues, concerns and dilemmas we all face. The community answers will be summarized here for everyone's benefit. 

Get Connected

Connect with the Rett Syndrome Foundation and others in the Rett Syndrome community through social media or join one of IRSF's Support Networks today. IRSF offers numerous support networks in an effort to provide the specific support tailored to the needs of you and your family.

- See more at: http://www.rettsyndrome.org/understanding-rett-syndrome#sthash.zHoTyGdf.dpuf

 

What is Rett syndrome?

Rett syndrome is a unique developmental disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys.

History

In 1954, Dr. Andreas Rett, a pediatrician in Vienna, Austria, first noticed two girls as they sat in his waiting room with their mothers. He observed these children making the same repetitive hand-washing motions. Curious, he compared their clinical and developmental histories and discovered they were very similar.

Testing and Diagnosis

Rett syndrome is most often misdiagnosed as autism, cerebral palsy, ornon-specific developmental delay. In the past, making the correct diagnosis called not only for a long list of diagnostic tests and procedures to rule out other disorders, but it also took from months to years waiting to confirm the diagnosis as new symptoms appeared overtime.

- See more at: http://www.rettsyndrome.org/understanding-rett-syndrome/about-rett-syndrome#sthash.WeLS0NbX.dpuf