UTICA- Smith Magenis Syndrome awareness day is recognized on November 17.
Smith Magenis Sydrome is a rare neurobehavioral disorder that's estimated to affect one in 15,000 to 25,000 births, and is caused by particular genetic changes on chromosomal region 17p11.2, which contains the gene RAI1, that's according to Casey Gorman who is the Executive Director for PRISMS.
PRISMS stands for "Parents and Researchers Interested in Smith-Magenis Syndrome." It's a non-profit organization in the United States that advocates for individuals affected by the disorder.
SMS is underdiagnosed, but Gorman says more people are being tested for it at a younger age.
Individuals with the disorder are attention seeking. Gorman says they love professional people and will try to always get attention from that person. They give great hugs, and at times self-hug. In general, they're described as happy people.
Gorman says they do have self-injurious behaviors. She says they'll pick their skin, some will pull out their finger nails and toe nails. "They can throw tantrums and have outbursts.” She adds, this all goes along with their attention seeking characteristics.
These individuals are mostly happy everyday.
More information: https://www.prisms.org/