It appears that being an adult with PKU can be somewhat more difficult than being a child with PKU – especially if you're a child with PKU in a country where the NHS covered the formula and dietary foods. As an adult with health insurance that covers jack with regards to a pre-existing condition and a state that has decided to lower/drop any assistance for adults on the diet, it seems that maintaining such a diet is bank-braking. Is it just me that sees having PKU as more of a financial burden than a dietary burden? I don't mind the diet – the support that drops away once you're an adult is sad, considering how many PKUs have to return to the diet because of complications related to it. Anyone have any news about what is being done to combat this? Is anything? Kuvan sounds wonderful if the coverage and money is available to cover it – to some, frankly, it's like a sick joke. Like too expensive insulin for diabetics. I am currently in Japan and looking into PKU out here. It is extremely rare here, more so than in the States and the UK for sure. The difficulty I'm running into here is that the doctors (some of them) haven't heard of adults having to take the formula supplement – only babies/children. It makes me wonder what the adults do? I hear they pioneered kuvan over here, so perhaps that is what they do? They also have a form of NHS, so perhaps that provides that coverage, however, I'd assumed that even on Kuvan, formula of some kind was still needed – especially if you have Classic PKU. Sorry I don't get on here that often and figured I'd get everything out in one topic. Answers aren't expected but comments are appreciated. Hope everyone is staying well.
I am from the UK and we dont get Kuvan here as the goverment wont Pay for it as apparently they wont waste money on something that only works for a few people its shocking but cant do anything about it !!!
It is amazing when you think – I feel dirty doing this – but from a fiscal standpoint, the use of Kuvan would save the British Government money, because with the prolonged benefits of its use, the PKU is less dependent on the normal amount of formula and dietary foods which over a lifetime would probably be higher than the cost of the formula. Ok I need to go shower now.
higher in cost that the Kuvan** I meant
I agree with what your saying about Adults not being able to get the help they need. Healthcare professionals seem to not realize that these babies and kids will be adults some day and there will be not help for them.
I did find a site called pkuchallenge.org it is geared for adults with PKU. The founder is Chris Howell. He is looking for adults with pku and from what I read he tries to help PKUers to get formula until their insurance kicks in. Just a suggestion. Hope this helps.
Yes your are right, pku is rare in the asian region……I am a Singporen born and I had pku, 2 cases…..I am the second one, the first one is now a vegetable sadly. Mine was picked late and damage was done to my brain and I now tackle alot of medical issues because of my late development due to the damage it did to me. I got scar tissue in the center my head and that can't be removed.
I was put on diet a lot later then most pku suffers, as result it mussed me dome [head] up. It was a huge expensive headache at the time for my folks, all that powder measuring and number scrunching plus blood test. I hated that blood test at that time, it was down right painful. Now with technology, the supperments are in little cooler packets and the pku detatian or doctor tell you how much you should take. Me I have drink em three times daily…..Bleeech!!!!
In Singapore the pku odds are 1 in a million. Me I am now mid 30's but still need to stay with me folks as my **flight feathers has been chopped.
**Having a normal life, have famliy a job and know how crunch figures for everyday use!!!**