Keys to Understanding SMS

Smith-Magenis syndrome (SMS) remains frequently undiagnosed and misunderstood. Learn more about symptoms and keys to serving those effected by this rare syndrome.

For the Healthcare Professional

Thank you for visiting PRISMS and seeking out more information about Smith-Magenis syndrome and our community.  PRISMS promotes awareness and understanding of SMS across professional communities that work with our families.

It is our hope that medical and allied health providers will find helpful guidance to optimize care for our community.

A key to optimal care is appreciating the unique person and how they are affected by their identified deletion, or mutation on chromosome 17.

Management involves evaluation for manifestations of Smith-Magenis Syndrome (SMS). Assessment can point to treatments that mitigate associated symptoms and conditions. Variability among individuals and developmental changes are also important to recognize.

3 Things to Consider about your Patient with SMS and their Family

  • SMS is a rare condition. As such, many parents and caregivers dedicate energy and time to researching the syndrome. You may find they bring immense expertise to appointments. We encourage you to listen to what they have to say.
  • Try scheduling appointments for your patient with SMS at quieter times and avoid long waits. This may be less overwhelming for your patient, avoiding  tantrums and outbursts that make appointments more difficult for all.
  • Be sensitive to your patient’s verbal and non-verbal cues and allow them space to feel comfortable in the setting. Do not overload them with direct questions and use positive distractions to help them feel more at ease. They are usually very cooperative patients and, with a few extra supports in place, they will become your favorite patient.

Resources for You

Get Connected

You are not alone. PRISMS offers a variety of ways for you to connect with other professionals working with individuals with SMS as well as parents, caregivers and educators.

Newly Diagnosed

We understand it can be overwhelming for a family trying to process the diagnosis, understand a new challenging vocabulary, and come to terms with the ways in which this diagnosis will affect them, their loved one, and their family. We encourage you to direct newly diagnosed families to PRISMS for support and connection to other families and resources.

Early Intervention

Children with Smith-Magenis syndrome typically face delays in specific development areas. Early intervention is highly recommended and has proven successful for many individuals with SMS and their families.

Living with SMS

From Behavior and Sleep to Medical Management and Guardianship, there are a variety of factors to consider and educate yourself on when it comes to your client with Smith-Magenis syndrome.

Spread Awareness

It can be important to share information on Smith-Magenis syndrome with your local community of practitioners who interact with your client with Smith-Magenis syndrome regularly. PRISMS offers awareness tools to help.

Find A Physician

PRISMS is actively working to build a searchable database to help members of the SMS community find physician’s and therapists in their region who have seen a patient or patients with SMS before. Help us build this database by signing up for the physician's database or nominating a physician in your area.

Active Research

Research leads to answers. We encourage you to look into the most recent research in the SMS community.

Attend the Conference

PRISMS hosts a biennial conference for the SMS community complete with opportunities to network and share with other families and engage and learn from professionals and researchers from around the world.

Quotes from Healthcare Professionals

“PRISMS is the organization I looked to for guidance and support in managing treatment options for my patient with SMS”
-Pediatrician

“I will continue to attend the PRISMS conferences every other year because there is always more to learn about SMS”
– Genetic Counselor

“SMS is a complex diagnosis. No two individuals are the same. PRISMS recognizes this and provides holistic support”
– Behavioral Therapist