Thursday, 14 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.


We all get anxious about things. Sometimes we fret about trivialities, but usually it’s the big stuff: exams, work, mortgages, relationships, the lack of willies on the heavily-oversubscribed-with-ladygardens Game Of Thrones. You get the picture.

For many people with Prader-Willi Syndrome anxiety can be as much of an issue as appetite. They are champion fretters. Worrywarts. And just as you need nerves of steel to negotiate the minefield of mealtimes, you also need to become adept at assuaging anxiety. 

My daughter gets anxious about things you’d expect any 16-year-old to be anxious about. And lots that you wouldn’t. Here’s a random selection of her worries* (*excluding the obvious “How long is it until dinnertime?”):

“Am I still breathing?”
“Will the hairdresser cut my hair too short?”
“Am I grinding my teeth down?”
“Is my schoolbag falling apart?”
“Will *insert name here* be there?”
“Will *insert name here* die because they’ve got a cold?”
“If this is a Disney film, I can’t watch it, it’s too babyish! Is it?”
“Is Topsy and Tim recording?”
“Will my tablet run out of batteries? It’s only 89% charged!”
“Why doesn’t my brother like Hello Kitty?”
“Why doesn’t Daddy like aubergines?”
“Santa isn’t going to bring me any presents, is he?”
“Will you be late?”
“Will we be late?”
“Will they be late?”
“Is Hitler in the toilet?” (I’ve written about this last one before. It’s the kind of thing that tends to stick in your mind.)

If I had to come up with a new ‘fretboard’ next week, several of these worries would still make the list, but the chart chops and changes, and never fails to surprise. Anxieties can arrive out of the blue, where there seems to be no earthly reason for them. Other times, their genesis is obvious; my daughter like to know when, where and why things happen, and they like them to happen exactly as planned in the expected order - and life? Well, life has a tendency to ‘un’ its ‘predictability’. 

So what can you do to minimise a PWS person's anxiety?

There is no easy answer. But sticking to your plans where you possibly can is a good start. And having a plan for when plans don't go to plan is another good plan. (I hope that's clear, I got lost in the middle there for a minute).

We don't always get it right. We try to explain, to distract, and to comfort. It's better to demonstrate than remonstrate.

And mostly, we just wait. The huge, all encompassing, meltdown-inducing worry might remain a problem, but often, in a day or two, it’s forgotten about. Just like a dead dictator in a toilet.

Song is Michael Kiwanuka - Worry Walks Beside Me

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