PWSA Blog

Whether it’s 90 degrees and humid or 70 degrees and cloudy, summer is just around the corner. That means it’s time to prepare and plan your summer fun! For individuals with Prader-Willi syndrome, summer fun must include plans for heat precaution as they often have difficulty regulating body temperature and can overheat easily. Here are some...

By Kristi Rickenbach, mother to Justice age 15 with PWS, board member, PWSA (USA)   “Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” ~ Helen Keller   There are things that happen in our lives that we have no control over- things we wish we could change....

Not on social media?  No problem!  PWSA (USA)’s daily PWS Awareness Month posts are available right here for you to access anytime.   Day 20 Hypogonadism (a condition in which the testicles are not working the way they should) and cryptorchidism (undescended testes) are both common newborn males with PWS and can lead to delayed...

You’ve heard exercise is good for physical health, but did you know research also shows exercise is beneficial to mental health and mood? According to the Mayo Clinic, physicalactivity stimulates endorphins in the brain that elevate mood and encourage relaxation. Exercise can fend off depression and anxiety in individuals with PWS and can even combat...

So far, we have looked at some of the many reasons negative behaviors occur, as well as behavior management techniques helpful with individual with Prader-Willi syndrome. Positive Behavioral Supportis another essential tool for caregivers. Positive behavioral support can help decrease tantrums, reduce perseverative and OCD like behaviors, and increase cooperation and effective transitions through activities....

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...

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...

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...

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...

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...

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...