‪#‎pkuawareness‬ ‪#‎pkuphotoaday‬ ‪#‎raredisease‬ ‪#‎pku‬ ‪#‎phenylketonuria‬
May 13 / day 13

New born screening kit.

#‎pkuphotoaday‬ ‪#‎pkuawareness‬ ‪#‎raredisease‬ ‪#‎pku‬
May 12/ Day 12

Formula bottle collection:
Evey day of my life I need to drink a medical formula I call my milk. It is essentially a protein drink with out phenylalanine. I have a prescription and need to drink it 4 times a day . The daily dosage is based on your weight. My formula keeps me healthy and provides me with a full intact nurtion with all the amino acids minerals and nutrients I miss from food. My formula gives me 60 grams of protein a day that is phenylalanine free . It keeps me full helps my body stay healthy. The formula is like my life support system. It’s a medication that u cannot live with out . It is very expensive and we rare very lucky that the Canadian government funds our formula since the day I was born . So I have never had to go with out. Unfortunately this is not the case in America and many pku patients cannot afford formula and suffer terrible side effects from not having it regularly.
This is my formula cupboard and supplies . I drink bettermilk m one package per meal and before bed with 8 oz of water. Shaken in a bottle snd drank with a straw. My milk is flavorless so I use mio to give me variety and to make it more enjoyable.

#pkuphotoaday #pkuawareness #raredisease #pku
May 11/ Day 11
Newborn screening – saves lives! #pku is the first disease detectable through newborn screening. Ever since the 1960s babies born in Canada and the USA are screened at birth for pku and other diseases. It is that heal poke test . The blood is placed on this for and sent for screening to bc children’s hospital. Even an as an adult I still take my blood myself from my finger and place it on this same card and mail it to be tested. Pku does not have a device to test blood like diabetics . There is one in development. I wait up to 10 days to get my results. Babies born prior to newborn screening who where not dianosed develop mental retardation by 6 months of age. The damage is permanent.

#pkuphotoaday Container of LP Food.

Day 10 : container of lp food. My favorite low protein meals is the aproten pasta ! They are very filling and delicious . I don’t no how I would manage my low protein diet with out pasta .One of my favorite meals is low protein pasta salad. I mix my pasta with miracle whip, corn , onions, mushrooms, green onions, peppers and more!

#pkuphotoaday Blue nails for PKU

#PKUphotoaday PKU Memes

#pkuphotoaday PKU Facts

#pkuphotoaday Favorite LP recipe

My most favorite and most diverse recipe. I use the dough in my pizza pops recipe as well as for buns and apple strudels.

#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!

#pkuphotoaday

Low protein meal

This is a photo of my low protein pancakes made with Cambrooke Mix Quick.  They taste wonderful and I love to fill them with Fresh fruit.