Hello to everyone

[cphillips]

Hi All. I have Type 1 and was diagnosed back in 2000. I found these message boards by accident and have found the postings very interesting. It is shocking the ignorance of diabetes by those who don't have it, and sometimes from those who should know better.

I also have a metabolic condition called Phenylketonuria (PKU). It is a rare inherited condition in which there is a build up of phenylalanine in the body. Too much of this over time can cause nerological problems. It is treated successfully with a low protein diet, ie not meat, fish, cheese, eggs, nuts etc.

This proved a little challenging particulary with carbonated drinks. Diet drinks were out as they contained Aspartame, which contains phenylalanine and normal drinks had too miuch sugar.

Now thanks to a couple of supermarkets own brands they make diet drinks without the Aspartame. A new world opens.

Just wondered if there were any other diabetics out there who also have PKU? Would love to hear from you.

Craig Phillips

 

[Northerner]

Hi Craig, and welcome!

I'd never heard of this condition before, thank you for explaining it. It must be very difficult concocting menus where you have to watch both proteins and carbs, and also know the chemistry of the artificial sweeteners - I take my hat off to you!

 

[Copepod]

PKU screening

Anyone who has had a baby in the UK should have heard of PKU - that's while babies are stabbed on their heels within a few days of birth to obtain blood to be sent on paper / card to laboratory for screening. Not surprisingly, it is pretty distressing in the short term for baby, parents and the nurse doing the stabbing! Particularly for one new dad, who was a soldier, and a nursing officer in a military hospital in Germany in early 1990s, as I remember well.

If the condition is discovered early and a low protein diet with amino acid supplements is started early enough, no damage to the nervous system will be caused. Dieticians are the health professionals most involved in PKU - so worth asking one or NSPKU if they can put you in touch with others with both diabetes and PKU.

National Society for Phenylketonuria http://www.nspku.org/