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PWS Awareness Month Week 2 Mini Blog – Oppositional Behavior

Individuals with Prader-Willi syndrome often demonstrate oppositional behavior, another challenge for parents and caregivers. Tips for managing oppositional behavior include: Avoid yes and no questions. Instead, offer limited choices. Rather than asking, “Do you want to wear your red coat,” try offering two choices: “Do you want to wear your red or blue coat?” It […]

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PWS AWARENESS MONTH WEEK 2 MINI BLOG – Perseverating

Perseverating, or getting stuck on a topic or task, or repeating the same question or phrase over and over again, is common in Prader-Willi syndrome. Often, the repetitive behavior is provoked by anxiety as the repetition provides a level of comfort to an individual with PWS. Unfortunately, perseverating can be exhausting for parents and caregivers. Here […]

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PWS Awareness Month Week 2 Mini Blog – Managing an Outburst

My loved one with PWS is having a behavior outburst, tantrum or meltdown. What can I do?   Being prepared and working with the individual with PWS to understand a triggering situation while helping them manage their anxiety can make difficult situation much easier to handle.   Use a calm tone of voice. Yelling or […]

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PWS Awareness Month Week 2 Mini Blog – Behavioral Outbursts

Many individuals with Prader-Willi syndrome face emotional and behavioral challenges that present as outbursts. However, whether it’s caused by a change in routine or the presence (or absence) of food outbursts can be managed. For example, maintaining food security and adhering to a set schedule for snacks and meals will decrease food-related anxiety, and providing […]

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PWS Awareness Month: Week 1

Not on social media?  No problem!  PWSA (USA)’s daily PWS Awareness Month posts are available right here for you to access anytime.   Day 1 May is Prader-Willi Syndrome Awareness Month! Republican Congressman Ed Royce and Democratic Congresswoman Jane Harman co-sponsored the original House Resolution thanks to efforts by Amy Porter (Aunt to Colorado’s young […]

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NUTRITION and HEALTHY LIVING

By: Stacy Ward, Director of Family/Medical Support & Special Projects   Parents and families of loved ones diagnosed with Prader-Willi syndrome have an array of concerns as their children move through life. By far one of their greatest struggles and worries is adequate nutrition and healthy living. PWSA (USA)’s Family and Medical Support counselors receive […]

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Receiving the Diagnosis

by Amanda Yanik The first and only person that mentioned Prader-Willi syndrome to us while our daughter Saoirse was in the NICU was the incomparable geneticist, Chin-To Fong, M.D.. I have a vague recollection of him coming in on a Friday night after the first week of our NICU stay. He mentioned a previous patient of […]

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Tips for Better Sleep

Quality sleep is vital to our physical and mental health, as well as our emotional wellbeing. Yet, many of us struggle to get a good night sleep on a regular basis. Now, imagine if you were rarely able to get a good night’s rest and the impact that accumulated “sleep deficit” would eventually have on […]

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