Also important to note that the average age of death for untreated PKU is 55. Being off diet with elevated phe has effects all over the body. Even just having a very low tyrosine level (which can result from elevated phe) has profound effects on the body and increases risk of death. According to my cardiologist, people with PKU are at higher risk of stroke. Do people with PKU know these things? I feel like even most physicians are unaware of these connections themselves.
I strongly believe that if we need to know as much as possible about this condition, we absolutely need to research and read the studies. There is a lot of information about PKU and health, but not everything makes it to the public.
Also important to note that the average age of death for untreated PKU is 55. Being off diet with elevated phe has effects all over the body. Even just having a very low tyrosine level (which can result from elevated phe) has profound effects on the body and increases risk of death. According to my cardiologist, people with PKU are at higher risk of stroke. Do people with PKU know these things? I feel like even most physicians are unaware of these connections themselves.
I strongly believe that if we need to know as much as possible about this condition, we absolutely need to research and read the studies. There is a lot of information about PKU and health, but not everything makes it to the public.