#pkuphotoaday  “I wish people knew —— about PKU ”

– pku is a rare genetic and metabolic disease.
– PKU is diagnosed at birth. It is a life long disease in which there is no cure . However with treatment it is manageable.
– having pku is not an allergy. My body cannot break down an amino acid in protein called phenylalanine. Phenylalanine is toxic to my body and can cause brain damage.
– the effects of pku are invisible. If I didn’t tell you about my pku you would not know I have it.
– I can pass on my pku genes
– my pku does not hold me back from living a normal life. It is a part of me.
– I have to monitor my blood like a diabetic does , but I don’t have a home testing device. I have to put my blood on a special card and mail it in the mail to bc children’s hospital for it to be tested. It takes 10 days to get my results
– if I didn’t have pku ..cole and I would have had a baby already. But there are things we need to consider and be careful about before conceiving.
– pku has evolved so much since my diagnosis and there has been many advancements and I am sure there will be many more
– when I was 12 I was pulled out of physical education class as they use to believe that it the breaking down of muscle caused my levels to be high.
-if I could eat anything I wanted I’d like to eat oatmeal or yogurt. And more rice !
-having pku effects how I live my life ever day but there are far worse disease out there so I consider myself lucky because pku is manageable.
– even having been treated my whole life in suffer from depression and anxiety . This is relatable to having pku as it makes me more susceptible to mental health issues
-newborn screening should be mandatory. .it saved my life and it is the only way to diagnose pku.
-If pku is not diagnosed at birth the baby will grow up with many aide effects such as being mentally handicap , developmental delays , and other neurocognitive impairments ..all which would have been preventable with screening.
– low protein foods are used as medical treatment in pku and my favorite low protein food is my medical pasta!