A personalized Rett syndrome diet is often an important part of caring for someone with the condition. Nutritional management for Rett syndrome may involve addressing feeding difficulties, digestive concerns, dysphagia (difficulty swallowing), and other nutrition-related needs. Understanding these issues can help you prepare for what to expect and…
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Families of girls and young women with Rett syndrome reported reduced overall quality of life, with emotional well-being emerging as the most affected area, according to a study from Brazil. Better family quality of life was associated with higher income, private health insurance, regular school attendance, and the absence…
Discussion
I’ve been taking a lot of flak for letting someone drape a giant snake around my daughter Abby a few weeks ago. And I’ll admit that, as part of my ongoing search for a therapeutic breakthrough for Abby, who has Rett syndrome, the experiment was a failure. The goat…
Discussion
Handprint art. Construction paper flowers. Homemade cards. Acrostic poems spelling out M-O-M. These are the images that come to mind when I think of Mother’s Day. For many years, my oldest daughter, Cammy, proudly gave me these treasures. Because she had Rett syndrome, Cammy was never able to…
Information about Rett syndrome
About
Rett syndrome is a rare genetic disorder that mostly affects females. The disease is characterized by normal early development, followed by slowed growth and a loss of motor control. Learn more about the disease here.
Causes
Most cases are caused by a mutation in the MECP2 gene. Scientists have identified mutations in CDKL5 and FOXG1 genes in those who have atypical or congenital Rett. Learn more about what causes the disease here.
Symptoms
Rett syndrome is associated with problems in cognitive, sensory, emotional, and motor skills, and across the nervous system that controls involuntary (or autonomic) functions. Learn more about the symptoms of the disease here.