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How to Identify Mental Health Challenges in Your Loved One with PWS

People with PWS are at a higher risk of certain mental health issues. Learn how to identify them, get help, and contribute to PWS mental health research.

October is Mental Health Screening Month, and we're encouraging our PWS community to learn more about how to identify mental health challenges early.

Mental health issues in PWS are a significant challenge for many people with Prader-Willi syndrome. As with behavioral challenges, they can have a significant impact on quality of life and independence for both the person with PWS and their family. People with PWS are at a higher risk of developing depression, bipolar disorder and psychotic symptoms particularly while in their teens and young adulthood.


Identifying Mental Health Issues in PWS

To identify potential mental health issues in PWS, look for changes versus the person's usual behaviors:

  • Eating – Are they less interested in food or consuming less food than usual?
  • Behavior – Are they displaying increased agitation or aggression? Are they more talkative or more withdrawn than usual?
  • Sleep – Are they sleeping less, or has there been a change in sleeping pattern, such being as up more at night or earlier in the morning, or napping more?
  • Grooming – Has there been a loss of interest in self-grooming habits such as changing clothes, brushing or combing hair, brushing teeth, and showering?

If you notice any of the above changes, if they're not related to physical illness and have continued for more than 1-2 weeks, it is recommended that you take the person with PWS for an assessment. Start with their primary care doctor or mental health provider, and provide them with information about mental health issues in PWS.

For more information on the mental health challenges in PWS, visit our PWS Mental Health Guidebook online >>

Help Us Learn More About Mental Health Challenges in PWS

Research has shown that people with PWS are at higher risk for specific mental health challenges, including “affective disorders” (depression, bipolar disorder) and psychotic symptoms, but there is much more we need to know.

The Psychological and Mental Health Survey in the Global PWS Registry only takes a few minutes to complete and asks if your loved one has experienced mental health conditions such as anxiety disorder, psychosis, depression, mania, bipolar disorder, etc. If your loved one has experienced any of these conditions, you will also be asked when the condition first began, the severity of the condition at its peak, and its current severity. 

Your responses to this survey will help us better understand mental health challenges in PWS and work towards improved treatments. We thank you in advance for your participation and look forward to sharing the results!

Take the PWS Psychological and Mental Health Survey

Topics: Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.