Community Discussion Forum Adults and PKU Adults With PKU Born before 1966? Reply To: Adults With PKU Born before 1966?

Avatar of karan

i love that i found this- i was born in 1960 before they did mandatory testing for pku. i was 8 when i was diagnosed. i have a younger brother who was diagnosed at the same time i was diagnosed – he was 3. russell is mentally retarded and they were amazed and maybe a little confused that i wasn't. they told me some stuff about my pku that ended up bring false. i was never on the diet until about 5 years ago. i was the reason they know that there are different types of pku with different manifestations. they did all kinds of research and psychological tests on me and my family. i have been on the diet about 5 years and on kuvan for nearly 2 but for me it's not the miracle that it promises. i did respond to the kuvan but i have other health issues that cause me to have really high levels even on kuvan. when i started the diet i did so with hopes of  amazing things and drastic changes in my life but for me it hasn't happened like that. i am seriously considering going off the diet maybe until i get my asthma controlled… this has become more stressful for me than i had ever anticipated. i continually run out of any kind of food and have to eat what's available for me…pku friendly or not…it gets to the point where it's about survival not about compliance.

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