Wednesday, 13 May 2015


This week is PWSA UK Awareness Week. The Prader-Willi Syndrome Association UK want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families, friends, and carers.


It’s Awareness Week and I’ve been trying to share some knowledge about Prader-Willi Syndrome. The basics - for the vast majority of people with the condition - begin and end with food. 

So I’ve come up with some etiquette advice about food. I'm calling it eatiquette.* 
Here it is...
  • Keep food out of sight: Don’t snack in front of people with PWS unless you know it’s their snack time, too. If you’re having a party, maybe the food could be kept in the kitchen, behind a closed door, rather than out on the table from the start. Never leave the PWS person alone with food. If it’s your responsibility to supervise them, watch them closely; they can be unexpectedly sneaky. If it’s not your responsibility, give the minder peace of mind by doing something really simple: move the bloody food.
  • Keep food out of mind: Don’t talk about that lovely curry you had last night, what you had for breakfast or how you could ‘murder some chips’. You’re not ‘famished’, you’re just a bit peckish. People with PWS are obsessed with food because they ARE properly,  physically, constantly hungry. If they bring the subject up, answer any of their questions, and try to move the conversation on to something else.
  • Communicate: Ask parents or carers in advance about the person's meal times, menus, and portions.
  • Be considerate: You wouldn’t open a beer under the nose of an alcoholic. You wouldn’t plonk a bowl of peanuts down on the table in front of someone with a nut allergy. A whispered “Is she allowed this?” when brandishing a plate with forbidden food does not count as being considerate. Check with mum or dad first, out of earshot of the person with PWS (and be aware that their earshot can put a long distance sniper to shame).
  • Think of alternatives: If you’ve got tortillas and dips, get a low fat huomous and some cucumber sticks. If you’re making a birthday cake, have a low calorie Weight Watchers’ cake slice on the side. There are such things as no-sugar jelly and light ice cream. Really. Think ahead. Ask.
  • Be on time: If you’re having a meal with a PWS family, don’t be late. Or if you are, send a message as soon as you know. And be prepared to grovel when you get there. Trust me, it really is just easier not to be late.
  • Do NOT say: Oh, one little piece of cake won’t hurt,” “They’re not even overweight,” “I don’t see what the problem is,” “They’ll grow out of it,” “They’ve only got Prader-Willi a little bit, haven’t they?”. (This last one, in particular, might result in me giving you a little bit of a slap).

I don’t want to be dictatorial about it. (Yes, I know that sounds hypocritical when I’ve finished that list with a threat of violence). I appreciate it’s hard for someone outside the PWS family to understand. But being thoughtful or thoughtless when it comes to food can be the difference between a day being utterly joyful or utterly awful.

The simplest and the best thing you can do is to say this: “Tell me what I can do to make it easier.” 

And then I’ll hug you.

Song is Spearhead - Food For The Masses
*This blog post was originally entitled Foodiquette, until my friend Hannah pointed out that it should be Eatiquette. I bow to her greater punnage.


  1. Wow, Drakeygirl ,I just love you.I've just read through all the posts on PWS awareness and I've lost count of how many times I've punched the air shouting "YES"! (it's ok, I'm alone in the house).You are so concise and thorough ,yet still contrive to make all your posts funny .Don't know how you do it, but I'm grateful-AND I'm going to show your blog to anyone who needs/wants to know about our kids with PWS.You don't know how much it means to be able to show people(especially professionals) that it's not just "Me";that I'm not an over anxious mummy;and yep, our life really is like that(a sort of parrallel existence,most of which they never ever have to consider.) Many thanks.X Beth

  2. Thanks, Beth. That means a lot. Are you going to any of the PWS picnics/parties coming up? Be lovely if you could...

  3. XXXX (one for each of you).I read all your posts .Hell, I've maybe met you at one of the conferences,although the last one we went to was a few years back now,in Coventry.Can't get around as much these days as the car is old and the chest is bad. The last PWS "do" we went to was a west midlands christmas party,although the one in Heaton Park is close too.(only around 100 miles away,LOL) I'm afraid all the PWS partying I'm going to be doing in future will be vicarious, but doesn't stop me thinking about y'all.X Beth