For the Health Professional
SMITH-MAGENIS SYNDROME (SMS) REMAINS FREQUENTLY UNDIAGNOSED AND MISUNDERSTOOD. LEARN MORE ABOUT SYMPTOMS AND KEYS TO SERVING THOSE AFFECTED BY THIS RARE SYNDROME.
UNDERSTANDING
SMS
WE’RE GLAD YOU’RE HERE
Healthcare Professionals
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.
We hope that medical and allied health providers 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
01
LISTEN TO YOUR PATIENT 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.
02
BE MINDFUL OF APPOINTMENT TIMES
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.
03
BE AWARE OF YOUR PATIENT’S CUES
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. Connect with PRISMS to stay up to date with the latest news about SMS and connect with other parents and caregivers of individuals with SMS.
Newly Diagnosed
We understand it can be overwhelming trying to process the diagnosis, understand a new challenging vocabulary, and come to terms with the ways in which this diagnosis will affect you, your loved one, and your family.
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.
Be a Part of Research
Research leads to answers. You and your loved one with SMS can help to advance research for the community by participating in one of our active research opportunities.
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.
Frequently Asked Questions
Understanding and navigating life with Smith-Magenis Syndrome can be complex—but you don’t have to do it alone. Our FAQs offer quick answers to common questions about SMS, available services, and how PRISMS supports families and professionals.