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International PKU Day!

(6 Posts)
InternationalPKUDay Sun 28-Jun-15 21:20:19

Hello!

It's time for my annual reminder that today is International PKU Day!

If you don't know what PKU is please watch this video. It's one of the conditions screened for on the heel-prick (Guthrie) test when babies are around 5 days old.

In the UK the incidence is 1 in 10,000, so PKUers are a rare bunch. It's entirely treatable (though not curable) but involves lifelong lifestyle differences.

Having, or caring for someone with PKU is hard. My mission is to support these people. Please help the PKU community by watching the video and sharing the infographic.

We are lucky to have the NHS here, many other countries are not so supportive. But there are things we need the NHS to do/change which won't affect anything else much (in terms of available treatments, protocols, etc) but because PKUers are so rare, it's difficult to be noticed and prioritised.

So please share.

Thank you!

[PS, I don't work for Mevalia, they just made the infographic last year!)

InternationalPKUDay Sun 28-Jun-15 21:30:13

A little bump for actives then I'll get back in my box till next year!

Quickchangeup Sun 28-Jun-15 21:50:01

Friendly bump smile
Thanks for the reminder and the video. I too have come across that same video with the undiagnosed sufferers and it makes you so relieved that proper diagnosis and treatment is available.

CMOTDibbler Mon 29-Jun-15 14:33:01

I'll bump as I was at school with someone who had two half sisters with PKU who had both been diagnosed at birth and were very healthy children.

InternationalPKUDay Mon 29-Jun-15 18:16:28

Thanks Quick and CMOT - I think you responded to my thread last year too?!

We had a new member to our fb group over the weekend with a new PKU baby. I wish we could bring the collective knowledge of mn in - I need to find out about formula feeding for her...

Quickchangeup Mon 29-Jun-15 20:49:49

That is the hard part of dealing with a pku diagnosis really in that it is a rare disease the support and advice networks are few and far between. The same I guess for any rare disease.

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