SMS FACTS

Smith–Magenis refers to two workers who described the condition in 1986, namely, Ann C. M. Smith, a genetic counselor at the National Institutes of Health, and R. Ellen Magenis, a pediatrician, medical geneticist and cytogeneticist at the Oregon Health Sciences University. Another names people may use to describe Smith-Magenis Syndrome include chromosome 17p deletion syndrome, deletion 17p syndrome, 17p11.2 monosomy, partial monosomy 17p, SMS and 17p- syndrome.

Left to remember all those who fought for us and never made it home and to all the loved ones we have lost. 11/11/11 x x

There is no cure for Smith–Magenis Syndrome. Treatment for SMS relies on managing its symptoms. Children with SMS often require several forms of support, including physical therapy, occupational therapy and speech therapy. Support is often required throughout an affected person’s lifetime.

People with SMS can expect to accomplish many of the things their “typical” peers do – attend school, achieve in their outside areas of interest, be successfully employed, even attend college courses. They do, however, need a significant amount of support from their families, school, work and residential service providers to achieve these goals. Early intervention plays a significant role.

Challenging behaviours occur at a much higher rate among children and adults with SMS than they do in people with other types of developmental disabilities. Common behavioural differences in individuals with SMS include attention-seeking, self-injury, attention deficits, with or without hyperactivity, explosive outbursts, prolonged tantrums, destructive and aggressive behaviour. The reason for these behaviours is unclear, although they appear to be related to underlying physical and developmental differences associated with SMS. Outbursts often result from frustration over communication difficulties, fine motor deficits, or changes in routine.

Many people with SMS crave interaction with adults and react negatively if attention is withdrawn or directed toward others. People with SMS frequently have rigid ideas about their world; a prolonged tantrum may result if things do not go exactly as expected or envisioned. Some of these behavioraul issues may be related to an underlying developmental asynchrony in which emotional growth progresses more slowly than other areas of development. Not surprisingly, sleep disturbance is also known to be a significant contributor to negative behaviours in people with SMS.

Although individuals with SMS may have speech delay they are always able to tell you what they want in the own ways!