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Product review of medical foods for PKU - Low Protein Diet

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Guest#1 Nov 18, 2016, 13:34
I have PKU and grew up in Australia with very little access to low protein foods. It was tough. Really tough. In most first world countries things have come a long way, but provision for the low protein diet is sorely lacking in Ireland. Products are extremely expensive to purchase and for many PKU adults and families this is not a financially viable option. The diet is incredibly limited and having access to a variety of low protein prescription foods can make all the difference in patient outcomes and additional pressures on the medical system due to lack of adherence.
Guest#2 Nov 18, 2016, 13:43
My son aged 20 months has pku. Is it fair that pku patients in every other EU country have decent foods to eat and Irish patients have to suffer due to HSE cutbacks?
Guest#3 Nov 18, 2016, 13:59
My niece has been on the PKU diet all her life and it is a very strict regime. To be able to eat a wider variety of food which is compliant with her diet would enhance her health, her well-being and her quality of life. This would be life-changing for her. I would dearly hope that this can be done.
Guest#4 Nov 18, 2016, 14:01
Because PKU needs to be more recognised
Guest#5 Nov 18, 2016, 14:12
Will all my family and friends sign this please ? It means a lot for my quality of life and my ability to be the best I can be for my kids and family. It's very hard to go through every day with cardboard bread and formula that destroys my teeth, makes my hernia worse and tastes awful, with no access to things that people take for granted and all the while knowing that if I lived in the UK or Europe i would have them all, right now and free of charge and could feel a little bit normal
Guest#6 Nov 18, 2016, 14:13

Our government are dragging their heels in every aspect of healthcare in this country, from approving new and innovative medicines to give people a chance at life to improving lists etc to give people a quality of life. We all deserve this dignity.

Guest#7 Nov 18, 2016, 14:21
Because I know PKU sufferers need this badly. They are totally forgotten about
Guest#8 Nov 18, 2016, 14:51
my 26 year son has pku
Gwen Kennedy#9 Nov 18, 2016, 14:59

I have HCU an allied disorder of PKU same low protein diet.I am 37 and this would support quality  of life .Will also  help kids/teens  alot to fit in more with peers.Cold toast for school lunch anyone? think not this is life and health altering

Guest#10 Nov 18, 2016, 15:03
For my niece and all those who have PKU
Guest#11 Nov 18, 2016, 15:18
My friends daughter has pku
Lee#12 Nov 18, 2016, 15:25

Because I have a 9 year old son who has PKU and it's very expensive and we shouldn't have too be paying €2.50 cent per item in the chemist for stuff that these PKU patients need it's not as if it's fancy way of living it's their fact of way living to keep them from getting brain damage ...

Guest#13 Nov 18, 2016, 15:29

My 6 Year Old daughter has pku it needs to be made more aware to people 

Guest#14 Nov 18, 2016, 15:44
It is important to so many people and I don't believe any government should ever dictate the freedom of the people they are elected by... People don't know what in life will affect them.
Guest#15 Nov 18, 2016, 15:55
Because my sister has pku and I want her to have the choice she can
Guest#16 Nov 18, 2016, 15:56
Because for years Irelands health system has decided to neglect measures that could greatly increase the quality of so many people, and its time to change this!
Guest#17 Nov 18, 2016, 16:02

My 14 month old daughter has HCU, an allied disorder that requires the same strict low protein diet. The list of approved foods requires immediate attention and new products need approval. Also, all products in the list of approved foods must be GMS listed. Currently there are several products that are only covered by LTI cards however the LTI card is not available to HCU, MSUD or other metabolic conditions that require the same strict low protein diet. 

Guest#18 Nov 18, 2016, 16:19
I have a class one friend who has a daughter that has PKU.
Guest#19 Nov 18, 2016, 16:19
I have two childrem with CPKU, very limited with the foods provided, kids are very boref with the food, it would be great to get better tasting food.
Guest#20 Nov 18, 2016, 16:29

My 9 year old niece deserves better from the HSE.  I'm sure having decent basic food options made available to her shouldn't be a luxury in 2016.  If the rest of Europe and other western countries can do it so can Ireland!

Guest#21 Nov 18, 2016, 16:52
Because I agree with it and we need to lobby.
Ciara#22 Nov 18, 2016, 16:54

My partner has pku

 My partner has pku,  he should have the right to choose which brand of bread he wants to eat, or what pasta he wants to eat.  He's not going to all of a sudden need to use more bread every week but he deserves the right to choice.  The Irish government have never given him this right!  

Guest#23 Nov 18, 2016, 17:06
A friend has children with this
Guest#24 Nov 18, 2016, 17:28
To support the cause
Guest#25 Nov 18, 2016, 17:32
Thanks Gwen I've a 9 yr old with pku and the difference choice makes to the pku diet is immense