First Steps
“YOUR LOVED ONE HAS BEEN DIAGNOSED WITH SMITH-MAGENIS SYNDROME…”
FIRST STEPS
SMS
NEWLY DIAGNOSED
Perhaps you are reading these words because a loved one was recently diagnosed with Smith-Magenis syndrome (SMS) or perhaps you are a professional working with an individual with SMS. However you came to find the PRISMS website, we hope it will be a starting point for you to gain support within this caring community and a better understanding of this complex genetic condition.
You may feel uncertain as you begin to process new information and adjust to what this means for your family. While this journey will come with challenges, you are not alone. PRISMS has built a strong network of support and valuable resources and is ready to walk alongside you as you navigate the path ahead with strength and hope. The PRISMS community is one of compassion and unwavering support, united by a shared commitment to improving the lives of individuals with Smith-Magenis Syndrome and their families.
Here are some FIRST STEPS you may consider when you are ready to learn more.
BUILD COMMUNITY
Join the PRISMS Community
Learn More About Living with SMS
BEHAVIOR
SPEECH & LANGUAGE
SLEEP
MEDICAL MANAGEMENT & TREATMENT
MEDICATION
GUARDIANSHIP & FINANCIAL PLANNING
READ THE GUIDEBOOK
Download our Guidebook
A Guidebook for Families Newly Diagnosed with Smith-Magenis Syndrome.
Acknowledging and Processing Your Emotions
Receiving a Smith-Magenis Syndrome (SMS) diagnosis can understandably evoke a range of emotions, with initial reactions often including shock or uncertainty. Coming to terms with this diagnosis is a deeply personal journey, and each family processes the information in their own way. Some may need time before seeking additional details, while others may want to learn as much as possible right away.
It is not uncommon to experience emotional stages similar to those associated with grief, and these feelings may resurface at various points along the journey. Taking time to care for your emotional well-being is a vital part of moving forward.
It is also important to recognize that individuals with SMS develop along unique paths. Their strengths and challenges exist across a broad spectrum, and many families find themselves continually inspired by their loved one’s growth, resilience, and accomplishments.
STAY CONNECTED & EXPLORE MORE
We hope in your FIRST STEPS in this journey of understanding Smith-Magenis syndrome, you will find the support and compassion that you and your family need and the educational tools to direct your next steps.
