What is Rett Syndrome
Rett syndrome (Rett syndrome, Rett's disorder) is a progressive neurological disorder. The symptoms of this disorder are easily confused with those of cerebral palsy. The clinical ...
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Siblings of Retts girls
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I see alot of support groups for the parents of girls with Retts but havent been able to find any for their siblings. My sister is almost 19 and was dx with Retts when she was 2. Im just curious how others have dealt or are dealing with having a sister with Retts, or finding a support group to join that promotes siblings who wish to promote awareness of their sister's disorder.
Posted on 09/05/09, 08:09 am |
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I grew up with a rett's sister and have always found support and understanding hard. It was always hard for people to understand the connection you have with a sister with rett's and also how she shapes our lives. Unfortunately, I lost my sister 2 years ago and it has been difficult to discuss with people who can't understand the meaning she had in my life. Many people have never heard of the syndrome and spend most of my time explaining the symptons rather than talking about her. 
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