Sunday, July 21, 2013

Conference Day 3

What can I tell you about today?  One of the most interesting issues in PWS which has turned up again and again, is this conference is about "delayed gastric emptying".  In other words, the contents of the stomach,  in the general population, take around about an hour to go through and into the intestines,  but take much longer in PWS, taking one hour 40 minutes.  So what does this mean?  It seems it could explain the gastric reflux that some suffer more than others, and the slower emptying of the stomach can cause a build-up of food which, if a person goes on an eating binge, can contribute to gastric necrosis (where the walls of the stomach are extended so much they thin out and can burst).  Also, the slower emptying can build up in the gut causing chronic constipation which is something  many people with PWS suffer from.  After listening to a few speakers who all mentioned this issue, but in different contexts, it all started to make a lot more sense.

Also very interesting was work done by Dan Driscoll et al on the nutritional phases that our guys go through, from birth to adulthood.  They did some tests with children who all had the same amount of calorific intake with no change and noted that the weight tended to suddenly increase at around 8 yrs of age.  They measured the amount of Ghrelin in the system (an appetite increasing hormone in the stomach) and found it was present in increased amounts which coincided with the sudden weight gain although appetite and calories had not been increased.  The inference is that obesity begins before the appetite increases, ie Ghrelin is probably involved in the increase of body fat, but not the hyperphagia.

I listened to an excellent talk by Jan Forster about insomnia, and her second talk about the need for routine. More of this on the blog later.

There was a blip in the catering front at lunch-time where catering had been done for far fewer than there actually were.  We were milling around outside waiting for sandwiches to come and without fail, everyone commented on how it must feel to have PWS!

Then there was the celebration dinner - held in a huge marquee with dancing and dancers (from a special dancing troup of wonderfully talented dancers with Downs' Syndrome) and everyone enjoying themselves.  Parents I spoke to all said the same thing, how wonderful it is to meet parents from all around the world.  Not only that, there are plenty of opportunities to speak to the professionals as many of them stay longer than just their two day conference and speak at the parents' conference too.  The pictures tell the story...













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