The holidays are often described as “the most wonderful time of the year,” filled with food, festivities, and family traditions. But for individuals and families affected by Prader-Willi syndrome (PWS), the holiday season can bring a unique set of challenges that are difficult for others to fully understand.
PWS is a rare and complex genetic condition that affects many systems in the body. People living with PWS may experience low muscle tone, growth hormone deficiency, cognitive and behavioral challenges, and struggles with regulation of temperature, pain, or sleep and hyperphagia, a chronic and life-threatening feeling of intense, persistent hunger.
Hyperphagia can make daily life extraordinarily difficult for individuals living with PWS and their families and friends. Food cannot simply be “ignored,” because many individuals with PWS experience it as a constant, powerful drive to consume. Families describe managing hyperphagia as exhausting, emotionally draining, and socially isolating, especially during seasons where food is front-and-center.
This guide brings together experiences and advice from caregivers in the PWS Community – parents and family members who navigate holiday challenges year after year. Their insights are meant to serve as a resource for relatives, teachers, friends, and community members who want to show up with compassion, inclusivity, and understanding. For even more detailed guidance, you can explore the “Understanding PWS: Showing Up with Care” engagement guide.
Why Holidays Are Especially Hard with PWS
Food is everywhere during the holidays: Halloween candy bowls, Thanksgiving feasts, cookie swaps, New Year’s celebrations, Valentine’s treats, and more. For families of individuals with PWS, this can mean constant vigilance around food.
- Parents may need to supervise every environment. Food can’t be left out on counters, buffet tables, or within reach. One caregiver described the season simply: “Watch, watch, watch.”
- Older children and adults with PWS face social pressures. Being offered candy at school or seconds at a family dinner creates anxiety., The sense of “missing out” can feel painful.
- Caregivers rarely get to relax. At large gatherings, caregivers may choose to skip attending altogether. But if they do attend, they often need to remain vigilant, continually watching over their loved one with PWS to ensure safety.
Tips for Families, Friends, and Hosts
The good news is that thoughtful planning and inclusive traditions can make an enormous difference. Here are practical ways you can support:
- Be intentional about food placement
- Designate one room or area for food.
- Put food away promptly when people are finished.
- Keep counters and tables clear when possible.
- Offer non-food activities and distractions
- Build traditions around games, crafts, music, or gift exchanges, instead of food being the sole focus.
- Consider small prizes or tokens for activities (e.g., toys in Easter eggs instead of candy, “Switch Witch” (comes to trade out Halloween candy for small toys/non-food items), or a piñata filled with trinkets instead of sweets.
- Assign children jobs like “holiday interviewer” or “photo helper” to make sure they feel included.
- Ask before you offer
- Never hand food to a child or adult with PWS without checking with their family. Even something that seems harmless, like a juice box or “just one cookie”, can create distress or medical risk.
- Educate and include others
- Ensure everyone who interacts with the child understands what PWS is and why food safety is critical
- Talk with the family ahead of time about safe options.
- At school, ask teachers and staff to:
- Give parents advance notice of classroom parties.
- Allow families of individuals with PWS to send safe alternatives.
- Identify a “safe person”
- At school or large gatherings, designate one adult who thoroughly understands PWS. This person can intervene if unsafe food is offered, manage unexpected situations, or simply give caregivers peace of mind.
Caregiver Voices: Real Holiday Experiences
Hearing directly from caregivers and individuals with PWS provides the clearest picture of what helps.
- On shifting traditions:
- “During Easter, some eggs are filled with money or prizes instead of candy.” – Leslie
- “We do the Switch Witch, where Halloween candy is swapped for a prize.” – Dominique
- On inclusion:
- “My friends text me before gatherings to review food options. At a birthday party, they filled a piñata with toys instead of candy so my daughter wouldn’t feel excluded.” – Tracy
- On unexpected challenges:
- “Even with careful planning, things happen. My daughter came home once with grape juice given by a therapist. I realized I can’t always prepare, so having a safe person at school has been key.” – Dominique
- On setting boundaries:
- “Sometimes people don’t always realize why ‘just one cookie’ can be such a serious problem. When that understanding isn’t there, families sometimes have to set limits to keep their child safe.” – Leslie
Advice for Families New to Navigating the Holidays
Veteran caregivers offered heartfelt guidance for those entering their first holiday season with worsening hyperphagia:
- Prepare ahead of time. Let your child know what to expect; it reduces anxiety and provides a sense of control.
- Communicate with others. Educate teachers, relatives, and hosts so everyone is on the same page.
- Keep choices limited. Too many options can feel overwhelming.
- It’s okay to leave early. Know when to step away or leave if the environment becomes too difficult.
- Be kind to yourself. This is hard for everyone; there’s no “perfect” way to handle it.
As one caregiver put it: “Most people want to know how they can help. Being honest and upfront about our needs makes it easier for others to support us.”
The Broader Burden of PWS
It’s important to recognize that hyperphagia is not the only challenge of PWS. Families may also navigate:
- Endocrine issues requiring growth hormone or other therapies.
- Developmental delays and learning differences can make school and daily routines more complex.
- Behavioral and emotional regulation challenges may intensify during stressful seasons.
- Medical comorbidities like scoliosis, sleep apnea, or diabetes.
Each of these adds to the already immense responsibility of managing hyperphagia. Understanding the whole picture allows relatives, teachers, and friends to offer more empathy and flexibility.
How You Can Make a Difference
If you have someone with PWS in your life, your actions during holidays and celebrations matter more than you might realize. Simple steps, like putting food away, offering safe alternatives, and asking questions instead of assuming, can ease a caregiver’s stress and help a child or adult with PWS feel genuinely included.
As Gwyn, mother of a 13-year-old with PWS, reflected: “Even now, my daughter still gets upset when she has to turn something down. Every supportive choice made by others helps her feel like she belongs.”
Resources
Families don’t have to face these challenges alone. Explore more tools and tips in the “Understanding PWS: Showing Up with Care” engagement guide or check out other resources from Prader-Willi Syndrome Association | USA and The Foundation for Prader-Willi Research.
And remember, inclusivity extends across all cultures and traditions. As one caregiver, Dini, shared: “For Diwali, sweets are such a big part of the celebration. I’ve been working on finding safe alternatives so my daughter can still participate and feel included.” Examples like these show how families everywhere adapt traditions, whether it’s Diwali, Thanksgiving, Rosh Hashanah, Christmas, or even classroom parties, to make space for their loved ones with PWS.
Together, we can create holidays and celebrations that are joyful, safe, and inclusive for everyone, because every child, teen, and adult living with PWS deserves to be part of the celebration.
C-US-PWS-00143 v1 10/2025
