Prader–Willi syndrome
Genetic disorderWikipedia
60
MENTIONS
21
EPISODES
17
PODCASTS
Search complete. 60 mentions across 21 episodes found for "Prader–Willi syndrome".
Oct 30, 2026
Jessica PatayGUEST
Ryan's the one I say is the one that made me a caregiver.
Jessica PatayGUEST
He was diagnosed with Prader-Willi syndrome at five weeks of age and autism at age seven.
Jessica PatayGUEST
And I have a daughter, Kate, who just turned 21.
Jessica PatayGUEST
And given my crazy and beautiful and difficult and shocking journey with PWS with our son, I became, well, I think I've always genuinely been passionate about community.
5 MINS LATER
Jessica PatayGUEST
We did start testing while we were in the hospital.
Jessica PatayGUEST
And then a week after, we got out and Ryan was five weeks of age.
Jessica PatayGUEST
We got a diagnosis, and that's Prader-Willi syndrome, a rare genetic disorder, which, to explain it quickly, early years, all the milestones are delayed.
Jessica PatayGUEST
OTPT speech is required, you know, all the early interventions.
Jessica PatayHOST
So I have two boys and a girl, Sheena.
Jessica PatayHOST
So it's Luke, then Ryan, who has Prader-Willi syndrome and autism, and then Kate.
Jessica PatayHOST
25, 23, 21.
Jessica PatayHOST
And I so badly wanted a girl.
Joakim ValsingerGUEST
affects me so much.
Joakim ValsingerGUEST
So Albie has a condition called Prader-Willi syndrome.
Joakim ValsingerGUEST
And...
Joakim ValsingerGUEST
there are lots of aspects to it um there are autistic traits um there are hunger issues he doesn't have it yet but um they have at some point it's it's one of the characteristics of that condition is that they have um insatiable hunger the brain doesn't recognize fullness so they can literally eat themselves to death And then the thing that is the most obvious is they have cognitive challenges, but he has low muscle tone.
Tiffany Michelle WalterGUEST
And I truly believe, you know, God rest her soul, my daughter, Michaela.
Tiffany Michelle WalterGUEST
was born with a very rare genetic disorder called Prader-Willi syndrome.
Tiffany Michelle WalterGUEST
And she battled with it from the time that she was born all the way until her passing.
Tiffany Michelle WalterGUEST
But I literally will say that God gifted me Michaela, so that I can now live and truly operate and act in my purpose.
Dan PashmanGUEST
Right, right.
Dan PashmanGUEST
It's called Prader-Willi syndrome, like this rare syndrome and people who have it like have insatiable hunger, like food has to be locked up or they could actually eat themselves to death.
Catherine SmartHOST
Yeah, like ripped their stomach.
Catherine SmartHOST
And I was just thinking about like, whoa, what an evolution.
CarrieHOST
Welcome to PWS United, a podcast for the Prader-Willi Syndrome community brought to you by PWSA USA.
CarrieHOST
This podcast gives the latest news in research, advocacy, and family support by bringing together staff, volunteers, PWS treatment specialists, biotech and pharmaceutical representatives, caregivers, family members, and individuals with PWS.
CarrieHOST
Our goal is to share education, awareness, and resources with those living with PWS and their supporters.
CarrieHOST
Join us in our mission to enhance the quality of life and empower those affected by Prader-Willi Syndrome.
Angela FrazierGUEST
Earlier this month, we brought close to 100 moms together in Utah for our second PWSA USA Moms Retreat.
Angela FrazierGUEST
Moment, an uplifting pause.
Angela FrazierGUEST
Moms raising a child with Prader-Willi syndrome carry so much, and their own needs often come last.
5 MINS LATER
AnnieHOST
Yeah.
Susanna Peace LovellHOST
Turns out autism is not contagious.
Susanna Peace LovellHOST
Prader-Willi syndrome is not contagious, right? It's, you know, we're over here doing our thing.
Susanna Peace LovellHOST
Feel free to join us in this joyful life that we are trying to continue to create and thrive together in.
Susanna Peace LovellHOST
Feel free.
9 MINS LATER
Jessica PatayHOST
Um, you know, I know that there were many years until I really radically accepted that Ryan's behavior and anxiety is never going to go away, but I would just get so angry about it.
Jessica PatayHOST
I would be so angry at him about it until, like I said, I radically accepted this is part of PWS.
Jessica PatayHOST
It may never change, no matter, you know, all the behavior training that I go through and implement, kids and adults with Prader-Willi syndrome are going to act like they have Prader-Willi syndrome, said an expert at a PWSA conference, and I took it to heart.
Jessica PatayHOST
I would say currently, you know, and over the last, you know, nine years plus of leading We Are Brave Together, And all the stories that I get to hear, and I feel very privileged that moms have shared so much, or obviously on the podcast or at events, retreats, DMs that I get.
Clete BarrickHOST
So for hypothalamic obesity, Imkivri is the better studied drug, and it is not a JLP1 drug.
Clete BarrickHOST
Prader-Willi syndrome is another case here.
Clete BarrickHOST
So a GLP-1 trial in kids and teenagers did not move their weight.
Clete BarrickHOST
In adults on semaglutide, weight mostly held steady instead of climbing.
SeanHOST
Williams Syndrome, yeah, he's got one.
SeanHOST
Hurler Syndrome, Hunter Syndrome, Autism Spectrum Disorder, Prader-Willi Syndrome, and Cerebral Palsy, to name a few.
SeanHOST
Yeah, so that's interesting.
SeanHOST
So
Robb TorsethGUEST
Those are the really, the different camps that you would have to approach this, right? So from the more contemporary perspective, we're looking at this and we're saying this could be some sort of disability.
Robb TorsethGUEST
So my wife actually had a member of her family who had a form of, I'm trying to remember what it's called, Prader-Willi.
Robb TorsethGUEST
It's Prader-Willi syndrome.
Robb TorsethGUEST
And I'm reading over this as I'm doing my prep for the class, and I'm looking at this.
Robb TorsethGUEST
It's a child who really is very unverbal, at least.
11 more episodes mention Prader–Willi syndrome.
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