Sunday, 24 November 2013


The people who EAT themselves to DEATH!

It sounds like a low budget, barrel-scraping, horror film sequel, doesn’t it?

It isn’t, though. It’s a stock phrase I’ve seen used in headlines about Prader-Willi Syndrome more times than a PWS person has dreamt of hot dinners. Well, maybe not that often, but hyperbole never knowingly underused, and all that. 

It’s probably heresy to admit it in the non-nuanced world of unwavering internet opinions, I have very mixed feelings about this phrase. Because it’s technically correct. People with Prader-Willi have a hunger that they cannot control. If allowed unrestricted access to food, then they could die, initially from a stomach rupture, or in the long-term because of the life-threatening levels of obesity and associated medical conditions that could follow.

It’s horrific. It’s shocking. It’s extreme, of course, because it’s a tabloid or magazine headline. But it’s true.

After 15 years of living with a child with PWS, the phrase doesn’t stab at me like it used to. But I still yearn to be able to add my own sub-deck:

The people who EAT themselves to DEATH!
But of course, this is very unlikely, because a lot of help, support and expertise is out there to help families prevent this happening, and with a bit of luck and a lot of hard work it’s perfectly feasible for someone with this condition to live a long and even a happy life.

Not exactly snappy, is it? 

Journalists have to boil complicated issues down. I geddit. I used to be one (local, not tabloid, I hasten to add, in an effort to emphasise that I have never rifled through a bin in my life, apart from that time I lost an earring, and anyway it was my bin). The focus on the ‘story’ of PWS for a tabloid will never be the families coping pretty well everyday with its challenges. It will always be the ‘volume turned up to 11’ end of the spectrum. And in some ways it should be. Awareness of the condition and the need to fundraise for research and support is never going to be improved by playing things down. 

A friend forwarded me a link to this recent Daily Mail* story about a ridiculously cute little lad with PWS. (*Obligatory warning: It’s The Mail. Do not, under any circumstances, look at the comments). Yes, this article is what sparked my EAT themselves to DEATH ramblings. It’s sensationalised of course. Buried near the end is a quote from the boy’s mum: “Michelle, who works as a part-time nurse, added: 'With the continued research in genetics and PWS, we remain positive about the future and hope that our little boy will be able to lead a happy and healthy life.'” This was immediately followed by four bullet-point examples showing bizarre and frightening examples of the very worst aspects of the syndrome, which in juxtaposition was like having a hug and then being slapped.

Read it. See what you think. Perhaps I’m being a bit cynical, but it has just struck me that the boy’s unusual name (a sure-fire internet ‘hit’ generator) might have been a factor in the story being published.

I’m torn. If more people become familiar with the syndrome, then it’s a good thing. On the other hand, it’s a pretty bleak read for anyone with a newly-diagnosed PWS baby. And on the other...well I’ve run out of hands, but, I’ll carry on anyway...the photos show a cheeky chappy who looks like fun. 

So here’s to Geezer (named, fantastically, after Black Sabbath bassist Geezer Butler). Life will not be easy for you. But that’s no reason why it can’t be good. 

Video is Black Sabbath - Fairies Wear Boots


  1. I too was sent this link from a friend-who I don't think had read it but thought I might like to-and was horrified and left in tears. How in any way has that article helped anyone other than to portray people with pws as monsters. Not helpful to a relatively newly diagnosed parent :( grrrr bloody daily mail

  2. Sorry to hear how upset you were by this story. As I explained above, I have mixed feelings, because I do think getting PWS into the public domain is important. Perhaps I'm inured to the 'shock' factor of these types of stories after all these years (I've seen lots of articles with a similar headline). For once, I don't think the Daily Mail is any worse than a lot of other publications. The article contains pretty accurate facts about the syndrome. It's just that by its very nature, any article on Prader-Willi in a mainstream publication is going to focus on the most extreme aspects of the syndrome. Which is what you just can't bear to hear when you're still coming to terms with a diagnosis.
    Just have a look at little Geezer's face. That's what you should take away from the piece. Before you know it your gorgeous baby will have grown into a cheeky toddler like him!

  3. Fairies Wear Boots - you sound like a real Sabbath fan!
    I also got sent the article based on the linkage to Geezer Butler!!
    Just like most tabloid PWS articles..

    Polly's Dad, Mum Liz

    1. I was a six year old punk and then a 10 year old metal head (due to the different musical phases my big brother was going through). So I still have a selection of Sabbath records, that transport me back to my childhood! Even a couple of Ozzy solo ones, too, which are truly atrocious :-)
      I don't mind people mentioning or sending me links to articles - I like to get them and see how PWS is presented. But it can be upsetting when your kids are newly diagnosed, (like Hannah says above) - particularly so when they focus on the 'shock' aspects.

  4. Daily Mail! Only the other week I was sitting with a group of doctors (part of my NHS admin job) who described the DM very sarcastically as "that well-known medical journal read by most of our patients". I had to laugh.