The challenges of Prader-Willi syndrome extend beyond the individual diagnosed to the entire family. Siblings growing up in a household with a person with PWS may need extra support to help them navigate their new normal and the unique family situation. Recognizing this, FPWR is proud to introduce a new guidebook: "A Parent’s Guide to Supporting Siblings with Prader-Willi Syndrome," authored by Lauren Schwartz, Ph.D., a devoted mother and a passionate advocate for mental health within the PWS community.
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The Inspiration Behind the Guidebook
Lauren Schwartz is not only a mother of two daughters—one with PWS and one without—but also a psychologist who has dedicated her career to improving the mental health and behavior of individuals with PWS and their families. Her experience, both personal and professional, uniquely positions her to understand and study the nuanced challenges siblings face.
“Having raised a daughter with PWS and a typically developing sibling, I’ve seen firsthand the challenges and often silent burdens siblings can carry,” Lauren shares. “They can be their sibling’s fiercest protectors and biggest cheerleaders, but they also have their own emotional landscapes that need extra nurturing.”
Understanding the Sibling Experience
The Parent’s Guide to Supporting Siblings emerged from a qualitative study conducted by Dr. Schwartz and funded by FPWR, which involved interviews with 25 siblings of individuals with PWS, aged 12 to 53. The findings revealed the deep, multilayered impact of PWS on sibling relationships, emotional well-being, as well as their relationship with food.
Supporting siblings is essential for the well-being of the entire family. “Siblings want to be seen and heard. They need to know their feelings are valid, even the not-so-positive ones, and that they are not alone,” Lauren says. “This guidebook shares insights directly from siblings and offers parents strategies to foster communication, build resilience, and create a supportive family environment.”
As families navigate the complexities of PWS, the new guidebook serves as a beacon of hope and a tool for empowerment. It underscores the importance of addressing the needs of every family member, especially siblings, who are often the unsung heroes in the PWS journey.
Lauren concludes, “This guidebook is a labor of love, born from my personal journey and professional mission. It’s a message to every sibling out there: You matter. Your story is important, and together, we can build a supportive community.”
Get Your Copy
"A Parent’s Guide to Supporting Siblings with Prader-Willi Syndrome" is now available. We encourage all parents in the PWS community to explore this valuable resource and embrace the opportunity to better support their children.
Click here for more information and to download the guidebook.
