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Hard to explain because our girls are so very different. You can look online at www.rettsyndrome.org and www.retthelp.info for a lot more information. Even if I told you about my daughter, it would be different for others. My daughter has never walked or talked. She has seizures, which are controlled by medication. She watches a lot of TV because she can’t do anything else. She talks with her eyes - which is usually the first thing people notice. She just had surgery to fix her scoliosis and kyphosis - we had to fuse her spine from neck to pelvis and put in rods. We are three weeks post operative and she is still in some pain.
When you go to the websites to look at the criteria for a RS diagnosis, there are girls who have it but don’t test positive for the genetic mutation (MeCP2 gene). My daughter rather than the hand wringing, puts her hands in her mouth.
I wish you luck. There is lots of information about this terrible condition.
WHAT IS RETT SYNDROME? Rett Syndrome is a devastating neurological disorder seen almost exclusively in females. It is the leading genetic cause of severe impairments in girls. Little girls with the disorder are born without any signs of the syndrome. By the age of 2 years, loss of language and motor skills are prominent. Breathing, digestion, heart rate and sleep patterns are dysfunctional. Scoliosis begins. Teeth grinding occurs. Seizures develop. Rett Syndrome leaves its victims profoundly disabled, requiring assistance with every aspect of daily living. These beautiful little girls, from the outside, look like perfect angels. However, Rett Syndrome takes over and robs them of a healthy life.
“Rett syndrome is a devastating disease. Think about what it takes to function normally: You have to be coordinated, you must be able to think, you have to be able to communicate, and you need to move smoothly and with balance. The symptoms of other neurological diseases affect some of these functions but Rett syndrome affects them all. It’s very hard not to be intrigued by this disease. We all are familiar with neurological diseases; I’m sure everyone has seen some one with epilepsy, or Parkinson’s disease, or bipolar disorder or schizophrenia. But when you see symptoms of all these diseases in one individual, you are struck by this. Rett syndrome is particularly heartbreaking because it develops after the child has already learned to walk, and perhaps even say a few words. To lose all that and gradually develop a symptom from almost every neurological disease in the book is quite mind boggling.” Dr. Huda Y. Zoghbi Professor in the departments of Pediatrics, Molecular and Human Genetics, Neurology and Neuroscience at Baylor College of Medicine. Investigator at the Howard Hughes Medical Institute. Source: http://www.hhmi.org/news/zoghbi20080530.html
Rett syndrome is a neurological and developmental disorder that mostly occurs in females. Infants with Rett syndrome seem to grow and develop normally at first, but then stop developing and even lose skills and abilities.
For instance, they stop talking even though they used to say certain words. They lose their ability to walk properly. They stop using their hands to do things and often develop stereotyped hand movements, such as wringing, clapping, or patting their hands.
That means people with Rett syndrome stop developing and even loose capbilities they had. They can loose the ability to speak, can’t walk and develop sterotyped movements caused by Retts.
I’ve read some things on the internet but I still dont get what it is can any one help?
I found this:
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