Community Discussion Forum Adults and PKU Focus on adults with PKU around the world Reply To: Focus on adults with PKU around the world

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Hello Soundwave,

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!!!**

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