Raising Awareness - RETTS

At a recent meeting I had the pleasure of meeting an individual who made me aware of RETT’s. To be honest, I had never heard of this particular Neurodevelopmental Disorder but I must admit that I was interested to know more. As a parent, I thought about how this disorder not only impacts the individual but how the families rally together to overcome any difficulties. We hope to raise awareness for RETT’s and in the meantime, read below to find out more.

RETT Syndrome is considered to be an inherited disease. It usually occurs in children who are under the age of 14 years old and occurs primarily in girls. The incidence of Rett Syndrome is approximately 1/120,000. The symptoms of Rett Syndrome seems to appear in various stages that occur over a long period of time.
From what we have learned, it appears that Stage 1 occurs within the first few years of an infant’s life. Though initially the symptoms present in a way that appears to be quite subtle and to some degree can be difficult for a parent to detect. Overall the symptoms in this stage seem to involve overall abnormal movement, a lack of social interaction and a disinterest in toys. Stage 2 exhibits signs of regression in physical and mental abilities. The child will begin to have identifiable social withdrawal, problems with sleep and a noticeable slowing of head growth. Stage 3 has been considered to be the plateau stage and takes place during the age of two and ten. Mobility, weight gain and abnormal movements of the tongue and mouth. Stage 4 is where a significant deterioration in movement occurs along with scoliosis and the complete loss of the ability to walk.

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