What PWS Really Is

Before you Google it — listen to this first.

Prader-Willi Syndrome has a clinical definition. It has a Wikipedia page. And none of that comes close to telling you what it actually looks like to live inside of it every single day.

In this episode, Tanya breaks it down the way she wishes someone had broken it down for her — not the textbook version, but the real one. The hunger that never turns off. The misconceptions that make families feel invisible. The parts of this life that are hard to explain to people who haven't lived it.

This episode is for the families who already know. And for the people who want to understand — really understand — what PWS is.

PWS Unfiltered. No filter. No sugarcoating. Just the truth.

Transcript

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Think about the last time you were genuinely hungry. Not I could eat hungry, actually hungry. Maybe you skip lunch because the day got away from you. Or maybe you were out running errands longer than you had planned. You know how everything shifts. You get irritated, can't focus, everything feels louder. People annoy you faster. You start thinking about food constantly. Now imagine that feeling never shuts off. Not after dinner, not after a second plate, not after anything. That's where we're starting today. And if you're listening to this on May 31st, that's not by accident. Today is PWS Awareness Day, and I couldn't think of a better day to do this episode. Today we're talking about what PWS actually is. Real life version. Not the 30-second Google medical definition. No judgment though, I still Google lots of things. I Googled what PWS was too, because I didn't know what it was I had to learn. I feel like even now I still catch myself struggling to explain this life to people outside of it. Because when something becomes your normal that you do every day, you just stop realizing how much weight you're carrying. You adapt. So this episode is really me trying to pull people into our world, even if it is just a little bit. What PWS actually looks like day to day, what people misunderstand about it, why families stay quiet sometimes, all of it, because I think these conversations matter. That feeling I described in the beginning has a name, hyperphasia, and there's so many pieces of this. The examples I'm going to give are specific to Aiden, though many PWS families experience similar things. A big one is the repeated food questions. Aiden says when can he eat again? Even if he just ate. So we decided to try a timer, which has seemed to work really well for him. We did try a visual chart briefly, but with Aiden being younger and changes to his routine, I feel like it did more dysregulation for him than it ever did good. Another piece is a strict mill and snack schedule. Aiden's on an eleven hundred calorie diet. For him, we started a schedule where he eats breakfast, a snack, lunch, a snack, then dinner. I feel like it's helped because he thinks he gets more, and it doesn't leave big gaps in between. Grocery stores are another layer, and to help Aiden we usually avoid taking him. When we do have to take him, we allow him to help carry things to the cart and check things off of the checklist. Because we make it as a game of him helping, it seemed to help distract him. And I really don't think people fully understand how consuming that can be unless you live around it every day. Because it's not just hunger. That's the thing people miss. It affects emotions, behavior, impulse control, anxiety, social situations, school, sleep, family outings, literally everything. And technically, yes. PWS is a rare genetic condition involving chromosome 15. It affects muscle tone, development, hormones, emotional regulation, all of it. But if I'm being real with you, most parents living this are not sitting around thinking about chromosome maps all day. We're thinking, how do we safely get through this grocery trip? How do we handle school lunches? How do we prevent meltdowns? How do we help our child emotionally regulate when their body is constantly telling them they need food? That's the live version of this. And can I just say something? One of the comments that gets under my skin is, but he looks normal. Like what? What does that even mean? I mean sure, from a stranger looking in, it's easy to look at Aiden and think he's a normal five-year-old boy. They don't see the struggles from a small interaction, they don't see the challenges around the food, kids his age, fatigue, a change in his schedule leading to meltdowns, or everything else that comes with his diagnosis. Majority of it feels silent until it isn't. It feels dismissive sometimes because what you are seeing is maybe 30 seconds of his day. You don't get to see the internal battle underneath it all. The emotional exhaustion, the constant redirecting, and I really need people to understand this part. Our kids do not grow out of PWS. People say that sometimes like it's comforting. Like eventually everything just evens out. That's not a reality for Aiden or families like ours, because it doesn't just even out. We learn to adapt and build systems around our child. For instance, every day we know Aiden wakes up as soon as the sun comes out, it seems like, and that's the start of our days. Early mornings and late nights. Scanning for what's in his reach, preparing him for any changes in his routine to avoid panic or anxiety that follows, leaving room for his siblings to feel what they feel, keeping him active, taking his medicine at the same time every day, having back-to-back appointments, school, planned meals. Honestly, the list goes on and on and on. You learn to figure things out as you go, but PWS is still there. And another thing people don't realize, every family experiences this condition differently. What works in one house might completely fail in another house, and that doesn't make somebody a bad parent. Some families struggle more medically, some behaviorally, some emotionally, some financially, some with support systems and some without. So when people act like there's one right way to navigate this, yeah, that's frustrating. One of the things that doesn't get talked about enough is black and white thinking. And honestly, I think black and white thinking is one of the reasons so many families stay quiet, which is one of the reasons I started this podcast. Because support spaces are supposed to feel safe, right? But sometimes they don't. Sometimes it becomes, well, my child would never do that, or you shouldn't handle it that way. And whoa, sometimes judgment gets wrapped up as advice really fast. The stares in public when your child throws themselves on the ground and others make you feel like you need to discipline or get a hold on your parenting of them. Or when someone tries to hand your kid a treat without asking you beforehand and you have to take it. Man, the judgment or looks are wild, not understanding that it's for their protection and not punishment. Or what about when strangers don't get to see a full picture of the day and make it seem like you starve your child because they constantly ask over and over and over for food. And look, I think most people mean well, I do, but what works for one child might completely fail for another child. Every family is trying to survive something difficult the best way that they know how. And I think we need more room for nuance in this community, more room for honesty, more room for people to say, hey, this part is hard, or this strategy isn't working for us, without feeling attacked for it. Because shame silences people, and isolated families become even more isolated. If I could help people understand one thing, it's how exhausting this can be in ways people never really see. Constantly thinking ahead, constantly calculating, constantly trying to prevent problems before they even ever happen. And after a while it becomes so normal, so normal you almost stop realizing how much pressure your nervous system is carrying all the time. And when somebody actually asks how I'm doing, instead of only asking about Aiden, I remember that. Like genuinely remember it. Because caregivers become invisible sometimes, they just do. And another thing people don't always understand is how emotionally complicated normal events become. Birthday parties, restaurants, sleepovers, school celebrations, family gatherings. One example is staying in close contact with his teachers, the school, and anyone hosting events or birthday parties. We always make sure to let them know that we don't want Aiden to fell left out, but we also need to know in advance what food will be there so we can plan his intake for the rest of the day. The same goes for any gathering where food is involved. Instead of spending the whole time hovering over him or trying to keep him distracted, we found it's more effective to talk to him directly. We teach him about keeping himself safe and about respecting boundaries, like not grabbing food off someone else's plate. That's easier said than done though, because with PWS, the drive to eat, can be stronger than anything we've taught him in that moment. That's why consistency matters so much. The more we reinforce it, the more it actually clicks for him. Things that seem simple suddenly require strategy. Sometimes we say no to things not because we don't want to be there, but because we are mentally trying to figure out if the environment is actually manageable for Aiden. And that can feel lonely, really lonely sometimes. And I also want to say something about the way people talk about good and bad days. I don't really frame things that way anymore because honestly, I think it does our kids a disservice sometimes. For me, there are lighter days and heavier days. On lighter days, Aiden laughs more. He's more flexible, we joke around, we have those really beautiful ordinary moments that every parent loves. And those moments matter so much because they remind you your child is not their diagnosis. But even on lighter days, PWS is still there in the background. And then there are heavier days, more anxiety, food thoughts, more emotional overwhelm, impulsivity, frustration, skin picking behaviors, more pushback and defiance. And those days are hard for all of us, but I try really hard to separate Aiden from the condition itself because he is not PWS. He's funny, loving, sweet, smart, and he's incredibly caring. Like I said in episode one, he's my little sour pouch kid. And sometimes I think people outside this world hear about behaviors and struggles so much that they forget there's an actual child underneath all of it. A child trying really hard. And if this helped you understand PWS even a little more clearly, share it with somebody. A teacher, a friend, a grandparent, anybody trying to understand what families like ours are actually navigating every single day. Most people will never know what it took to get through an ordinary Tuesday in your house, and you did it anyway. That's worth saying out loud. Next episode, we're talking about navigating systems, therapies, insurance, schools, advocacy. The part where parenting starts feeling like a second full time job you never trained for. And yeah, we're going to get really honest about that one too. Until next time.