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Living With SMS

Living with and caring for persons with SMS can be challenging. One may need to consult a range of doctors in different disciplines like neurology and genetics in order to achieve a correct diagnosis and develop an approach for management of therapy as relevant to the individual person. The behavioral disorders, particularly with regards to the very common nighttime sleep disturbances in SMS, can be especially challenging.

Right now, there is no cure for Smith-Magenis Syndrome, but some of the symptoms can be treated. Many people successfully manage the disease through a combination of medications, counseling, and a medical and family support system.

Regarding sleep issues for those diagnosed with SMS it may be worth considering these questions in conversation with their doctor:

  • Do they have trouble falling asleep or staying asleep at night?
  • Do they often wake up very early in the morning, commonly well before others in your household?
  • Do they get a full night’s sleep, and feel awake and well rested the next day?
  • Do they often fall asleep during the day, particularly in the afternoon, or take excessively long naps that can disrupt their daytime routine or reduce productivity?
Your Nighttime Sleep Disturbances Toolkit:
  • Nighttime Sleep Disturbances in SMS Doctor Discussion Guide
  • Nighttime Sleep Disturbances in SMS Guide for Your Doctor
To find out more about potential treatment options for nighttime sleep disturbances in SMS or arrange for a genetic test
please sign up for a health educator to reach out to you or call 833.433.4331