Purple and Blue for Smith Magenis Syndrome (November)

Purple and Blue for Smith Magenis Syndrome (November)

Smith Magenis Syndrome is also known as Chromosome 17p Deletion Syndrome. It is a neuro behavioral disorder (a group of conditions associated with brain injuries, impairments and injuries). 

Signs and symptoms of Smith Magenis Syndrome include: peripheral neuropathy (reduced sensitivity to pain), scoliosis, failure to thrive, obesity, hyperactivity, impulsivity, repetitive self-hugging, finger licking, and subclinical seizures.  There are developmental and cognitive delays as well.

Self injurous behaviors include hitting, biting, picking (on skin) or banging the head. I am happy that most medical facilities are aware of these types of behaviors in children with special/emotional/behavioral needs and there are therapies that can be taken to teach children how to redirect these behaviors. 

Many children with Smith Magenis Syndrome are personable but because they do not get the proper sleep, they experience frequent temper tantrums and outbursts. 

Facial features of those with Magenis Syndrome include square shaped face, deep set eyes, full cheeks and prominent lower jaw.  

A multidisciplinary approach is used to treat the variety of conditions associated with this diagnosis. Physical therapy, occupational therapy, behavioral therapy, speech along with vocational therapy are commonly implemented.  Parents are encouraged to get respite care and psychosocial therapy to help with the stressors the family is dealing with.

Reignbows supports all those with special needs and disabilities.  Reign was born with Dandy Walker Syndrome, Cerebral Palsy, Epilepsy and Hydrocephalus. Our goal is to educate and advocate for this population that is often overlooked or misunderstood. 

 

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