#phenylketonuria Instagram Photos & Videos

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Latest #phenylketonuria Posts

  • This little angel is now 19 months old - yesterday! I pray she always knows full well that she is fearfully and wonderfully made, a wonderful work of God (Psalm 139:14). She was born with phenylketonuria (fen-ul-key-TON-ur-ee-uh), PKU, which is a rare genetic condition that causes an amino acid called phenylalanine to build up in the body. To prevent that buildup, she has to eat a low protein diet and carefully measure how much phenylalanine, or phe for short, she consumes.

I’ve debated for a while about sharing our story on here. How much of her story is mine to share? I want to raise awareness without stepping into her lane. I’m still not sure exactly how much I will share on here but I decided to jump in for two main reasons:

Most importantly, I want to share the HOPE that I have in Jesus Christ that renews my strength and allows me to run without growing weary (Isaiah 40:31). I pray to be an encouragement to you.

I also wanted to stand with others with PKU and their loved ones to raise awareness of PKU and paint a little (encouraging but realistic) picture of what daily life for someone with PKU can be like.

Plus, I have gotten so many wonderful recipe ideas and General PKU life hacks from others in the community that are ahead of us in this journey. I’d like to be able to give back by sharing some of the low protein recipes Dorothy is enjoying (or will hopefully enjoy someday). She is only a toddler after all!

I can’t wait to connect with you! Let me know - how are you connected to the low protein world?
  • This little angel is now 19 months old - yesterday! I pray she always knows full well that she is fearfully and wonderfully made, a wonderful work of God (Psalm 139:14). She was born with phenylketonuria (fen-ul-key-TON-ur-ee-uh), PKU, which is a rare genetic condition that causes an amino acid called phenylalanine to build up in the body. To prevent that buildup, she has to eat a low protein diet and carefully measure how much phenylalanine, or phe for short, she consumes.

    I’ve debated for a while about sharing our story on here. How much of her story is mine to share? I want to raise awareness without stepping into her lane. I’m still not sure exactly how much I will share on here but I decided to jump in for two main reasons:

    Most importantly, I want to share the HOPE that I have in Jesus Christ that renews my strength and allows me to run without growing weary (Isaiah 40:31). I pray to be an encouragement to you.

    I also wanted to stand with others with PKU and their loved ones to raise awareness of PKU and paint a little (encouraging but realistic) picture of what daily life for someone with PKU can be like.

    Plus, I have gotten so many wonderful recipe ideas and General PKU life hacks from others in the community that are ahead of us in this journey. I’d like to be able to give back by sharing some of the low protein recipes Dorothy is enjoying (or will hopefully enjoy someday). She is only a toddler after all!

    I can’t wait to connect with you! Let me know - how are you connected to the low protein world?

  •  1  1  4 hours ago
  • (ad/Werbung) 🇬🇧 I am going to be drinking my tea in Germany and not in England! ☕️ | Yes, you read correctly, I am staying in Germany. Thanks to the #coronavirus I cancelled my trip to England. I already cancelled it 3 weeks ago. I did not feel well with going to another country within this time and I was very unsure if this trip will take place at is was planned. 
I rather stay in my own apartment than sitting a 3 people bedroom and not be able to go out. 
Sadly, not going to England means that I will start my master's studies at least one semester later as well because staying abroad is an admission requirement. Right now, I planned to go to England in July, wish me luck!🍀
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🇩🇪 Ich werde meinen Tee in Deutschland und nicht in England trinken! ☕️ | Ja, du hast richtig gelesen, ich bleibe in Deutschland. Dank #corona habe ich meinen England-Trip storniert und das schon vor 3 Wochen. Ich habe mich nicht wohl damit gefühlt zu dieser Zeit in ein anderes Land zu reisen und ich war mir da schon nicht sicher, ob dieser Trip überhaupt so stattfinden wird wie geplant.
Ich bleibe lieber in meiner eigenen Wohnung als in einem 3-Bett-Zimmer zu sitzen und nicht die Möglichkeit zu haben, raus zu gehen.
Leider bedeutet dieses Stornieren auch, dass ich mein Masterstudium mindestens ein Semester später beginnen kann, da der Auslandsaufenthalt Zulassungsvoraussetzung ist. Bis jetzt ist geplant, dass ich im Juli nach England gehe, wünscht mir Glück!🍀
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#stayhome #wirbleibenzuhause #zuhause #home #life #lifestyle #motivation #healthy #health #gesund #vegetarian #vegetarisch #vegan #plantbased #pku #pkuer #pkustrong #phenylketonurie #phenylketonuria #metabolicdisorder #stoffwechselstörung #raredisease #lowpro #lowprotein #eiweißarm #lowprodiet #eiweißarmediät #alinapku
  • (ad/Werbung) 🇬🇧 I am going to be drinking my tea in Germany and not in England! ☕️ | Yes, you read correctly, I am staying in Germany. Thanks to the #coronavirus I cancelled my trip to England. I already cancelled it 3 weeks ago. I did not feel well with going to another country within this time and I was very unsure if this trip will take place at is was planned.
    I rather stay in my own apartment than sitting a 3 people bedroom and not be able to go out.
    Sadly, not going to England means that I will start my master's studies at least one semester later as well because staying abroad is an admission requirement. Right now, I planned to go to England in July, wish me luck!🍀
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    🇩🇪 Ich werde meinen Tee in Deutschland und nicht in England trinken! ☕️ | Ja, du hast richtig gelesen, ich bleibe in Deutschland. Dank #corona habe ich meinen England-Trip storniert und das schon vor 3 Wochen. Ich habe mich nicht wohl damit gefühlt zu dieser Zeit in ein anderes Land zu reisen und ich war mir da schon nicht sicher, ob dieser Trip überhaupt so stattfinden wird wie geplant.
    Ich bleibe lieber in meiner eigenen Wohnung als in einem 3-Bett-Zimmer zu sitzen und nicht die Möglichkeit zu haben, raus zu gehen.
    Leider bedeutet dieses Stornieren auch, dass ich mein Masterstudium mindestens ein Semester später beginnen kann, da der Auslandsaufenthalt Zulassungsvoraussetzung ist. Bis jetzt ist geplant, dass ich im Juli nach England gehe, wünscht mir Glück!🍀
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    #stayhome #wirbleibenzuhause #zuhause #home #life #lifestyle #motivation #healthy #health #gesund #vegetarian #vegetarisch #vegan #plantbased #pku #pkuer #pkustrong #phenylketonurie #phenylketonuria #metabolicdisorder #stoffwechselstörung #raredisease #lowpro #lowprotein #eiweißarm #lowprodiet #eiweißarmediät #alinapku

  •  61  5  10 hours ago
  • Chocolate chip banana bread 💕
Being on lockdown does have some benefits..
It’s the ideal time to try new pku friendly recipes and to update some of my favourites ! With that in mind I changed up my banana bread recipe by adding some chocolate chips and some other different ingredients..
I used  vitaflo s vitabite chocolate and it was ideal , it’s really hard so held its structure well and didn’t overpower the recipe ... it’s really tasty , I was surprised .. will definitely include it in my next order ... All too often I reach for shop bought cooking chocolate and while it’s not too high in protein , it’s nice to try the protein free alternative .... The recipe was a great success and tastes yummy ..
Lovely served with butter and jam or just on its own .... Recipe :
350 grams flour , I used fate all purpose mix 
1 tsp baking  powder 
30 g light brown sugar
2  over ripe , blackish bananas , mashed 
2 tsp loprofin  egg replacer 
2 bars of vitabite chocolate grated / diced into small chunks 
85 g butter 
1tsp vanilla essence 
1/4 cup milk - I used sno pro 
Method 
Mix all dry ingredients together and rub the butter in.
Add the mashed bananas and milk and mix .
Finely chop the vitabite chocolate so you have tiny bite sized pieces of chocolate , fold into the mixture 
Place the mixture into a greased baking tin and put into a pre heated oven @ 170 degrees for 50 minute . Enjoy !! #pku#phenylketonuria #proteinfreerecipes#bananabread#pkuadulthood#vitabite#vitaflo#pkucodublin#pkuireland#vegan#vegansweettreats
  • Chocolate chip banana bread 💕
    Being on lockdown does have some benefits..
    It’s the ideal time to try new pku friendly recipes and to update some of my favourites ! With that in mind I changed up my banana bread recipe by adding some chocolate chips and some other different ingredients..
    I used vitaflo s vitabite chocolate and it was ideal , it’s really hard so held its structure well and didn’t overpower the recipe ... it’s really tasty , I was surprised .. will definitely include it in my next order ... All too often I reach for shop bought cooking chocolate and while it’s not too high in protein , it’s nice to try the protein free alternative .... The recipe was a great success and tastes yummy ..
    Lovely served with butter and jam or just on its own .... Recipe :
    350 grams flour , I used fate all purpose mix
    1 tsp baking powder
    30 g light brown sugar
    2 over ripe , blackish bananas , mashed
    2 tsp loprofin egg replacer
    2 bars of vitabite chocolate grated / diced into small chunks
    85 g butter
    1tsp vanilla essence
    1/4 cup milk - I used sno pro
    Method
    Mix all dry ingredients together and rub the butter in.
    Add the mashed bananas and milk and mix .
    Finely chop the vitabite chocolate so you have tiny bite sized pieces of chocolate , fold into the mixture
    Place the mixture into a greased baking tin and put into a pre heated oven @ 170 degrees for 50 minute . Enjoy !! #pku #phenylketonuria #proteinfreerecipes #bananabread #pkuadulthood #vitabite #vitaflo #pkucodublin #pkuireland #vegan#vegansweettreats

  •  29  1  10 hours ago
  • Friday night, date night: covid style 😷 In this crazy world we have so much to be thankful for. Last night I shared a sushi boat with bae 🍣  While it wasn’t our favorite Friday night dinner restaurant and we definitely were not dressed for the occasion I couldn’t have asked for a better night. Bonus was the furry four-legged guy in the middle of us on the couch 🐕  It made me realize all I have during this trying time. Let’s all spread some positivity and share what we are thankful for 🤎
1. Sharing a sushi boat with my husband. This has never happened! When we go out they always split up our sushi thinking I have a “seafood allergy” (i.e. anaphylaxis). This is not the case with PKU and every time I’m cooking or dining out I am thankful for this.
2. Happy I finally mastered sushi rolls. This has been a labor of love and one I only had the time for during a quarantine. 
3. Working from home in a job that I never thought working from home was possible. Thankful for my coworkers on the front lines and feeling guilty I’m not there with them. 
4. @onepeloton 🚲 Enough said. 
5. Connecting with loved ones in a different way through zoom, Snapchat, and FaceTime❣️
6. Maintaining good health as that is my current focus and my healthcare providers supporting that.
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#pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku
  • Friday night, date night: covid style 😷 In this crazy world we have so much to be thankful for. Last night I shared a sushi boat with bae 🍣 While it wasn’t our favorite Friday night dinner restaurant and we definitely were not dressed for the occasion I couldn’t have asked for a better night. Bonus was the furry four-legged guy in the middle of us on the couch 🐕 It made me realize all I have during this trying time. Let’s all spread some positivity and share what we are thankful for 🤎
    1. Sharing a sushi boat with my husband. This has never happened! When we go out they always split up our sushi thinking I have a “seafood allergy” (i.e. anaphylaxis). This is not the case with PKU and every time I’m cooking or dining out I am thankful for this.
    2. Happy I finally mastered sushi rolls. This has been a labor of love and one I only had the time for during a quarantine.
    3. Working from home in a job that I never thought working from home was possible. Thankful for my coworkers on the front lines and feeling guilty I’m not there with them.
    4. @onepeloton 🚲 Enough said.
    5. Connecting with loved ones in a different way through zoom, Snapchat, and FaceTime❣️
    6. Maintaining good health as that is my current focus and my healthcare providers supporting that.






    #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku

  •  92  13  15 hours ago
  • Jedno z ulubionych. Weekend , tydzień, dzien, noc to wszystko sie zlewa.. Tym bardziej, że mamy ze sobą tate ♥️ dzis w końcu musimy wyjsc, ja ogarne tez balkon.. W koncu Idek byl tylko raz w tygodniu na dworze.. To przytlaczajace.. Dzis ja zakladam nosidlo, bierzemy Bencia, zachowujemy odleglosc i chociaz na 20 min musimy wyjsc, bo oszalejemy. I to sa właśnie minusy mieszkania w centrum miasta... W takim momencie chcialoby się dom na wsi z ogrodem i swobodą no ale.. Moze kiedys, marzenia sie przecoez spełniają ... A jak Wy sobie radzicie? Moze macie jakies pomysły? Chetnie przygarniemy.. Juz nawet krew pobieramy raz w tygodniu ponieważ na wyniki czekamy bardzo dlugo i jest to stresujace. Mam ogrom pytan do lekarzy prowadzących Izydorka a zostaja one w powietrzu ponieważ mamy brak kontaktu.. Ogromnie frustrujace, nie wiem co dalej.. Boimy się, doceńcie kochani, ze macie zdrowe dzieciaki, wiecie jak je zywic i zapewnic dobrostan fizyczny. My codziennie drżymy, bo w zaistniałej sytuacji nie wiemy co dalej... Dzialamy intuicyjnie. Slemy ogrom buziakow! Bądźcie zdrowi!
#babyboy #babymodel #child #pkuchild #pku #pkubaby #veganbaby #goodtime #havefun #happychild #mylove #myeverything #jestembojestes #fenyloketonuria #fenymenalni #pkuconnect #phenylalanine #phenylketonuria #phenylfree #bathroomselfie #bathtime #babybath #polishbaby #idziobohater
  • Jedno z ulubionych. Weekend , tydzień, dzien, noc to wszystko sie zlewa.. Tym bardziej, że mamy ze sobą tate ♥️ dzis w końcu musimy wyjsc, ja ogarne tez balkon.. W koncu Idek byl tylko raz w tygodniu na dworze.. To przytlaczajace.. Dzis ja zakladam nosidlo, bierzemy Bencia, zachowujemy odleglosc i chociaz na 20 min musimy wyjsc, bo oszalejemy. I to sa właśnie minusy mieszkania w centrum miasta... W takim momencie chcialoby się dom na wsi z ogrodem i swobodą no ale.. Moze kiedys, marzenia sie przecoez spełniają ... A jak Wy sobie radzicie? Moze macie jakies pomysły? Chetnie przygarniemy.. Juz nawet krew pobieramy raz w tygodniu ponieważ na wyniki czekamy bardzo dlugo i jest to stresujace. Mam ogrom pytan do lekarzy prowadzących Izydorka a zostaja one w powietrzu ponieważ mamy brak kontaktu.. Ogromnie frustrujace, nie wiem co dalej.. Boimy się, doceńcie kochani, ze macie zdrowe dzieciaki, wiecie jak je zywic i zapewnic dobrostan fizyczny. My codziennie drżymy, bo w zaistniałej sytuacji nie wiemy co dalej... Dzialamy intuicyjnie. Slemy ogrom buziakow! Bądźcie zdrowi!
    #babyboy #babymodel #child #pkuchild #pku #pkubaby #veganbaby #goodtime #havefun #happychild #mylove #myeverything #jestembojestes #fenyloketonuria #fenymenalni #pkuconnect #phenylalanine #phenylketonuria #phenylfree #bathroomselfie #bathtime #babybath #polishbaby #idziobohater

  •  73  4  16 hours ago
  • Enjoying a plate of sweet potato slices! Seasoned with steak spices! Peel and slice sweet potato, drizzle oil, season and roast in oven at 400 for 20 minutes! #delicous #pkusnack #phenylketonuria  #lowprotein
  • Enjoying a plate of sweet potato slices! Seasoned with steak spices! Peel and slice sweet potato, drizzle oil, season and roast in oven at 400 for 20 minutes! #delicous #pkusnack #phenylketonuria #lowprotein

  •  43  0  23 hours ago
  • PiZzA tOaSt!!! This is one of my favorite low protein recipes 😍🍕🤤 All you need is 2 pieces of your favorite low pro bread (I use EnerG brand Tapioca Loaf), pizza sauce of your choice, low pro cheese (I use Sunny Acres brand that I find at Dollar Tree for only a buck!), and I added garlic power, parsley, and red pepper flakes! If you aren’t a huge fan of spicy foods or other seasonings, just skip the extras :) For this specific dish I also added some roasted mushrooms and zucchini but you can really add any toppings you’d like! Let me know if you try this for yourself or make it for a family member! And comment what you like to do for low pro pizza recipes ❤️😁 #pku #phenylketonuria #pkuteen #lowprotein #vegan #vegetarian #plantbased #healthylifestyle #healthyfood #pkurecipes #pkumom #pkustrong #pkuawareness #pkulover #pkueatlovers #roastedveggies #recipe
  • PiZzA tOaSt!!! This is one of my favorite low protein recipes 😍🍕🤤 All you need is 2 pieces of your favorite low pro bread (I use EnerG brand Tapioca Loaf), pizza sauce of your choice, low pro cheese (I use Sunny Acres brand that I find at Dollar Tree for only a buck!), and I added garlic power, parsley, and red pepper flakes! If you aren’t a huge fan of spicy foods or other seasonings, just skip the extras :) For this specific dish I also added some roasted mushrooms and zucchini but you can really add any toppings you’d like! Let me know if you try this for yourself or make it for a family member! And comment what you like to do for low pro pizza recipes ❤️😁 #pku #phenylketonuria #pkuteen #lowprotein #vegan #vegetarian #plantbased #healthylifestyle #healthyfood #pkurecipes #pkumom #pkustrong #pkuawareness #pkulover #pkueatlovers #roastedveggies #recipe

  •  58  10  3 April, 2020
  • #CornBread is a great one to make with the kids this weekend... super easy and really tasty! Eat alone with butter, sweet or savoury! Get the recipe at Cambrooke.com/blog ... Happy Friday everyone! Have a lovely weekend with your loved ones. #pku #phenylketonuria
  • #CornBread is a great one to make with the kids this weekend... super easy and really tasty! Eat alone with butter, sweet or savoury! Get the recipe at Cambrooke.com/blog ... Happy Friday everyone! Have a lovely weekend with your loved ones. #pku #phenylketonuria

  •  33  0  3 April, 2020
  • Fruit Cupcakes🍓🥝... we have made some delicious recipes for you to try at home to get the kids (and you) into low protein baking and cooking. Stay tuned over the next week and have a great weekend 🥳#pku #phenylketonuria #cupcakes
  • Fruit Cupcakes🍓🥝... we have made some delicious recipes for you to try at home to get the kids (and you) into low protein baking and cooking. Stay tuned over the next week and have a great weekend 🥳 #pku #phenylketonuria #cupcakes

  •  30  0  3 April, 2020
  • #loprofin Banana Choc chip muffin. Recipe base is on 2nd photo. I added 1tsp vanilla essence, 1 small banana mashed up and 1/4 cup chocolate chips before adding the dry ingredients and alt milk to complete the recipe.
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#huaweip10 #leica #aucklandlife #lowprotein #phenylketonuria #phenylketonuriafood #pku #pkufood #vegetarian #vegetarianrecipes #vegetarianismo #vegetarianmeals #vegetariancooking #lowprotein #lowproteindiet #lowproteinlifestyle #dietforlife #dietforlifenotweightloss #dietforlifenotfornow #rarediseaseawareness #rarediseaseday #rarediseasesday #rarediseaseadvocate #healthylifestyle #healthyeating #chronicillness #chronicillnessawareness #chronicallyfabulous #chronicillnesswarriors
  • #loprofin Banana Choc chip muffin. Recipe base is on 2nd photo. I added 1tsp vanilla essence, 1 small banana mashed up and 1/4 cup chocolate chips before adding the dry ingredients and alt milk to complete the recipe.
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    #huaweip10 #leica #aucklandlife #lowprotein #phenylketonuria #phenylketonuriafood #pku #pkufood #vegetarian #vegetarianrecipes #vegetarianismo #vegetarianmeals #vegetariancooking #lowprotein #lowproteindiet #lowproteinlifestyle #dietforlife #dietforlifenotweightloss #dietforlifenotfornow #rarediseaseawareness #rarediseaseday #rarediseasesday #rarediseaseadvocate #healthylifestyle #healthyeating #chronicillness #chronicillnessawareness #chronicallyfabulous #chronicillnesswarriors

  •  32  2  3 April, 2020
  • So today was different for me...I’ve been on Kuvan since January and things have been going great. I’ve slowly been able to almost double my natural protein tolerance. However, the last 2 weeks my levels have been elevated (7-9). So today we did a ‘restart’ of sorts. I had only Periflex and a very low amount of phe. Hopefully things will be better in a few days. Mommy thinks I’m teething too. #pku #phenylketonuria #julianhaspku #lowprotein #specialboy
  • So today was different for me...I’ve been on Kuvan since January and things have been going great. I’ve slowly been able to almost double my natural protein tolerance. However, the last 2 weeks my levels have been elevated (7-9). So today we did a ‘restart’ of sorts. I had only Periflex and a very low amount of phe. Hopefully things will be better in a few days. Mommy thinks I’m teething too. #pku #phenylketonuria #julianhaspku #lowprotein #specialboy

  •  16  1  2 April, 2020
  • 🇰🇷 PKU friendly Korean | This is by far one of my favourite dishes I can eat out at restaurants. 🍄Mushroom Japchae 🍜

This dish uses sweet potato noodles (almost free of protein), sauteed mushroom, carrot and onion, sesame oil and dark soy sauce (only real source of protein for this dish). Easy to make at home too. Give it a go 😊

#pku #phenylketonuria #phe #phenylalanine  #raredisease #iem #inbornerrorsofmetabolism #lowprotein #lowproteindiet #chronicillness #metaboliccondition #metabolicdisease #metabolicdisorder #geneticcondition #genetics #geneticdisorder #rare #raredisease #recessive #korean #japchae
  • 🇰🇷 PKU friendly Korean | This is by far one of my favourite dishes I can eat out at restaurants. 🍄Mushroom Japchae 🍜

    This dish uses sweet potato noodles (almost free of protein), sauteed mushroom, carrot and onion, sesame oil and dark soy sauce (only real source of protein for this dish). Easy to make at home too. Give it a go 😊

    #pku #phenylketonuria #phe #phenylalanine #raredisease #iem #inbornerrorsofmetabolism #lowprotein #lowproteindiet #chronicillness #metaboliccondition #metabolicdisease #metabolicdisorder #geneticcondition #genetics #geneticdisorder #rare #raredisease #recessive #korean #japchae

  •  102  6  2 April, 2020
  • Staying at home with school-aged children is not always easy. Here is a free download for My PKU Activity Book. This 35-page activity book includes coloring sheets, puzzles, and other activities to help children learn about PKU. Link to download a free copy in our profile. #pku #phenylketonuria
  • Staying at home with school-aged children is not always easy. Here is a free download for My PKU Activity Book. This 35-page activity book includes coloring sheets, puzzles, and other activities to help children learn about PKU. Link to download a free copy in our profile. #pku #phenylketonuria

  •  54  4  2 April, 2020
  • NO DUMBBELL-NO PROBLEM workout 🔥🥛 here (Follow @adzmcg_pt )

Split Squats ⚡️ x 10 (per side)
Glute Bridges ⚡️ x 10
Dips ⚡️ x 10
Plank Walks ⚡️ x 10
Lateral Lunges ⚡️ x 10 (per side)
Step Ups ⚡️ x 10 (per side)
Curl to Presses ⚡️ x 10
Renegade Rows ⚡️ x 10 per side

Be creative- you could use your shopping, milk cartons, water bottles for some of these moves.

Start off with 2 rounds and try a 3rd if you’ve more 🔋 in the tank!

You only need light weight to make this work.

What are you going to use as weight? Be creative and COMMENT your answers below 👇🏻 Also SHARE with a friend who would benefit from moving in lockdown

Much love x
  • NO DUMBBELL-NO PROBLEM workout 🔥🥛 here (Follow @adzmcg_pt )

    Split Squats ⚡️ x 10 (per side)
    Glute Bridges ⚡️ x 10
    Dips ⚡️ x 10
    Plank Walks ⚡️ x 10
    Lateral Lunges ⚡️ x 10 (per side)
    Step Ups ⚡️ x 10 (per side)
    Curl to Presses ⚡️ x 10
    Renegade Rows ⚡️ x 10 per side

    Be creative- you could use your shopping, milk cartons, water bottles for some of these moves.

    Start off with 2 rounds and try a 3rd if you’ve more 🔋 in the tank!

    You only need light weight to make this work.

    What are you going to use as weight? Be creative and COMMENT your answers below 👇🏻 Also SHARE with a friend who would benefit from moving in lockdown

    Much love x

  •  40  5  2 April, 2020
  • Thank you @organicpku for sharing this delicious Glytactin RTD Lite Coffee Mocha shake! It looks amazing! 
How do you take your Glytactin? 
Happy Thursday everyone 😁

#pku #phenylketonuria
  • Thank you @organicpku for sharing this delicious Glytactin RTD Lite Coffee Mocha shake! It looks amazing!
    How do you take your Glytactin?
    Happy Thursday everyone 😁

    #pku #phenylketonuria

  •  21  0  2 April, 2020
  • What do you miss most from life pre covid? 🦠  I miss the little treats like Starbucks and doing work out classes at an actual gym. It hasn’t been all bad and staying at home for meals has lead me to experiment more (more to come on that). I desperately craved an indulgent coffee so I whipped this up with @ajinomoto_cambrooke mocha glytactin rtd lite as the base ☕️ Mix with @traderjoes coconut cold brew coffee, a few ounces of flax milk or coconut milk and top with chocolate drizzle 💯 I actually enjoyed it more than any coffee ordered off the Starbucks menu. ⭐️ Side note- why do straws make everything taste better? Don’t worry peeps it’s recyclable 😝
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#pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku
  • What do you miss most from life pre covid? 🦠 I miss the little treats like Starbucks and doing work out classes at an actual gym. It hasn’t been all bad and staying at home for meals has lead me to experiment more (more to come on that). I desperately craved an indulgent coffee so I whipped this up with @ajinomoto_cambrooke mocha glytactin rtd lite as the base ☕️ Mix with @traderjoes coconut cold brew coffee, a few ounces of flax milk or coconut milk and top with chocolate drizzle 💯 I actually enjoyed it more than any coffee ordered off the Starbucks menu. ⭐️ Side note- why do straws make everything taste better? Don’t worry peeps it’s recyclable 😝







    #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku

  •  70  3  2 April, 2020
  • Working from home... Its a love-hate relationship. Managing my day to day symptoms is 10000% easier at home but my ability to focus is better when im at my desk and in the office. Going to work was my only excuse for ever having to leave the house. Now I'm afaid I'll decompensate because I have no reason to leave my room. Doctors appointment s have been cancelled or moved to telehealth (I understand this is necessary but I'm not a fan). Im supposed to be in physical therapy but so far ive been given a few stretches and 2 phone calls. My chonic health care has become almost absent due to the fear of COVID-19. But i dont feel that is fair that my health has to suffer because of it. Ive dropped far below my baseline of normal and its freaking me out. Sorry for the rant... I havent left my room in 2 weeks
  • Working from home... Its a love-hate relationship. Managing my day to day symptoms is 10000% easier at home but my ability to focus is better when im at my desk and in the office. Going to work was my only excuse for ever having to leave the house. Now I'm afaid I'll decompensate because I have no reason to leave my room. Doctors appointment s have been cancelled or moved to telehealth (I understand this is necessary but I'm not a fan). Im supposed to be in physical therapy but so far ive been given a few stretches and 2 phone calls. My chonic health care has become almost absent due to the fear of COVID-19. But i dont feel that is fair that my health has to suffer because of it. Ive dropped far below my baseline of normal and its freaking me out. Sorry for the rant... I havent left my room in 2 weeks

  •  26  2  2 April, 2020
  • 🍽️ Today's WFH lunch.... Cauliflower fried rice 🤤

1. Add a tsp of coconut oil into a pan
2. Add some diced onion, garlic and ginger
3. Once softened, add in 1 cup of riced cauliflower 
4. After a minute, add in desired amount of frozen peas
5. Add 1tbsp of coconut aminos and salt to taste
6. Take off heat and stir through chopped corriander and fresh parsley
7. Enjoy 💁🏻‍♀️ #pku #phenylketonuria #phe #phenylalanine  #raredisease #iem #inbornerrorsofmetabolism #lowprotein #lowproteindiet #chronicillness #metaboliccondition #metabolicdisease #metabolicdisorder #geneticcondition #genetics #geneticdisorder #rare #raredisease #recessive #wfm #workingfromhome
  • 🍽️ Today's WFH lunch.... Cauliflower fried rice 🤤

    1. Add a tsp of coconut oil into a pan
    2. Add some diced onion, garlic and ginger
    3. Once softened, add in 1 cup of riced cauliflower
    4. After a minute, add in desired amount of frozen peas
    5. Add 1tbsp of coconut aminos and salt to taste
    6. Take off heat and stir through chopped corriander and fresh parsley
    7. Enjoy 💁🏻‍♀️ #pku #phenylketonuria #phe #phenylalanine #raredisease #iem #inbornerrorsofmetabolism #lowprotein #lowproteindiet #chronicillness #metaboliccondition #metabolicdisease #metabolicdisorder #geneticcondition #genetics #geneticdisorder #rare #raredisease #recessive #wfm #workingfromhome

  •  63  0  2 April, 2020
  • 💥New BLOG💥 Given we are all in “lockdown” find a quite space and take a few minutes to read Nicholla Kinscher’s second blog- Preconception: Let the journey begin! It’s an honest and raw account of how Nicholla went out about planning her first pregnancy(link in BIO) ... Enjoy 😊 #pku #phenylketonuria #lowprotein #pregnancy #raredisease #inbornerrorsofmetabolism
  • 💥New BLOG💥 Given we are all in “lockdown” find a quite space and take a few minutes to read Nicholla Kinscher’s second blog- Preconception: Let the journey begin! It’s an honest and raw account of how Nicholla went out about planning her first pregnancy(link in BIO) ... Enjoy 😊 #pku #phenylketonuria #lowprotein #pregnancy #raredisease #inbornerrorsofmetabolism

  •  17  0  2 April, 2020
  • I’m finding it difficult to get the juvela bread rolls that I normally use day to day for toasting , etc 
So I had to make do with the lo profin part baked rolls 
They never work out for me , but this time I preheated the oven to 200 degrees and put them on for ten minutes , they were quite nice 
Had them with salad for lunch and then made bruschetta with them for dinner . 
When cut in half after being cooked and then toasted they are the perfect base for bruschetta ..
The ingredients I used were 4 tomatoes finely chopped 
2 red onion , finely chopped 
Generous helping of basil , 
2 cloves of garlic crushed 
30 ml balsamic vinegar
50ml olive oil 
Mix the tomato , onion garlic and basil 
Season with salt and black pepper . Mix in the olive oil and balsamic vinegar ...
Place the mixture onto each half of the roll 
It’s really tasty and simple and best of all protein free 🤗🤗
**the addition of balsamic changes it up a bit , all too often with bruschetta , it can be drowned in olive oil which can ruin it **
#pku#phenylketonuria#pkuadulthood#loprofin#proteinfree#italian#bruschetta#pkuireland#pkucodublin
  • I’m finding it difficult to get the juvela bread rolls that I normally use day to day for toasting , etc
    So I had to make do with the lo profin part baked rolls
    They never work out for me , but this time I preheated the oven to 200 degrees and put them on for ten minutes , they were quite nice
    Had them with salad for lunch and then made bruschetta with them for dinner .
    When cut in half after being cooked and then toasted they are the perfect base for bruschetta ..
    The ingredients I used were 4 tomatoes finely chopped
    2 red onion , finely chopped
    Generous helping of basil ,
    2 cloves of garlic crushed
    30 ml balsamic vinegar
    50ml olive oil
    Mix the tomato , onion garlic and basil
    Season with salt and black pepper . Mix in the olive oil and balsamic vinegar ...
    Place the mixture onto each half of the roll
    It’s really tasty and simple and best of all protein free 🤗🤗
    **the addition of balsamic changes it up a bit , all too often with bruschetta , it can be drowned in olive oil which can ruin it **
    #pku #phenylketonuria #pkuadulthood #loprofin #proteinfree #italian #bruschetta #pkuireland #pkucodublin

  •  32  0  1 April, 2020
  • (ad/Werbung) 🇬🇧 Blood levels 03-26-2020 💉| I have got my blood levels back and they are still bad. As the goal of the phe level is <600, this is still way too high. You saw my week of what I ate and I don't know what to do anymore. Yes, I had days on which I ended up eating chips/crisps that I did not count, but I am absolutely sure that I did not eat more than 600mg phe. Let's see if I have to lower my tolerance once more. I will keep you updated in my stories!
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🇩🇪 Blutwerte 26.03.2020 💉| Ich habe meine Blutwerte zurück und sie sind immer noch schlimm. Da das Ziel für den Phe-Wert bei <600 liegt, ist das noch viel zu viel. Ihr habt gesehen, was ich eine Woche lang gegessen habe und ich weiß nicht mehr, was ich tun soll. Ja, ich hatte Tage, an denen ich abends noch Chips gegessen und nicht gezählt habe, aber ich bin mir sicher, dass ich nicht mehr als 600mg am Tag gegessen habe. Mal sehen, ob ich meine Toleranz noch weiter senken muss. Ich werde euch in meiner Story auf dem Laufenden halten!
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#bloodlevels #blutwerte #sad #depressing #toohigh #frustrated #life #lifestyle #motivation #healthy #health #gesund #vegetarian #vegetarisch #vegan #plantbased #pku #pkuer #pkustrong #phenylketonurie #phenylketonuria #metabolicdisorder #stoffwechselstörung #raredisease #lowpro #lowprotein #eiweißarm #lowprodiet #eiweißarmediät #alinapku
  • (ad/Werbung) 🇬🇧 Blood levels 03-26-2020 💉| I have got my blood levels back and they are still bad. As the goal of the phe level is <600, this is still way too high. You saw my week of what I ate and I don't know what to do anymore. Yes, I had days on which I ended up eating chips/crisps that I did not count, but I am absolutely sure that I did not eat more than 600mg phe. Let's see if I have to lower my tolerance once more. I will keep you updated in my stories!
    .
    .
    🇩🇪 Blutwerte 26.03.2020 💉| Ich habe meine Blutwerte zurück und sie sind immer noch schlimm. Da das Ziel für den Phe-Wert bei <600 liegt, ist das noch viel zu viel. Ihr habt gesehen, was ich eine Woche lang gegessen habe und ich weiß nicht mehr, was ich tun soll. Ja, ich hatte Tage, an denen ich abends noch Chips gegessen und nicht gezählt habe, aber ich bin mir sicher, dass ich nicht mehr als 600mg am Tag gegessen habe. Mal sehen, ob ich meine Toleranz noch weiter senken muss. Ich werde euch in meiner Story auf dem Laufenden halten!
    .
    .
    #bloodlevels #blutwerte #sad #depressing #toohigh #frustrated #life #lifestyle #motivation #healthy #health #gesund #vegetarian #vegetarisch #vegan #plantbased #pku #pkuer #pkustrong #phenylketonurie #phenylketonuria #metabolicdisorder #stoffwechselstörung #raredisease #lowpro #lowprotein #eiweißarm #lowprodiet #eiweißarmediät #alinapku

  •  32  13  1 April, 2020
  • Małe wspomnienie. Czy w tym roku będzie nam dane spędzić beztroskie wakacje? Ze smutkiem obserwuje co się dzieje w Hiszpanii. Miejscu, które szczególnie jest bliskie mojemu sercu. Wiele zakątków świata było dane mi odwiedzić (choć żaden ze mnie podróżnik... niech moje imię Was nie zwiedzie🤪), ale to szczególnie przypadło mi do gustu. Czekam z utęsknieniem, aż dane mi będzie znów odwiedzić te malownicze plaże i miasteczka. Oby nas nie spotkał podobny los. Tymczasem #stayhome #zostańwdomu

@gymmafia_official 
@strefa_supli_wieckowskiego 
@lunchtimelodz 
@noproblemsportslodz 
@chilli_fitness 
@robsoncars 
@salon_luisseman 
________________________________________
@gymmafia_official - fabularyzowana seria krótkometrażowa 🎬
________________________________________
@strefa_supli_wieckowskiego - najniższe ceny i wiedza poparta doświadczeniem 💪🏻😎
________________________________________
@lunchtimelodz - katering dostosowany do Twoich potrzeb 🤤
Na hasło: Kobi 10% rabatu
________________________________________
@noproblemsportslodz - najlepsza odzież treningowa 🔥🔥
________________________________________
@chilli_fitness - siłownia z duszą, prowadzona przez ludzi z pasją 🏆
________________________________________
@anaboliclife.pl - naj bardziej anaboliczne suple na świecie 😁🤪
___________________________________

@salon_luisseman - hair, style & music 🎶💇🏼‍♂️ ___________________________________

@robsoncars - najlepsza wypożyczalnia samochodów luksusowych 🚘🚗 #gym #training #arms #tattoed #inkedboy #polishboy #polishgirl #funday #gymlife #gymlove #divertida #muydivertido #bomdia #shoulders #chesttattoo #bodybuilding #bodybuilder #fit #costabrava #fitspo #wakacje #see #animal #freak #spain #goodday #pku #phenylketonuria
  • Małe wspomnienie. Czy w tym roku będzie nam dane spędzić beztroskie wakacje? Ze smutkiem obserwuje co się dzieje w Hiszpanii. Miejscu, które szczególnie jest bliskie mojemu sercu. Wiele zakątków świata było dane mi odwiedzić (choć żaden ze mnie podróżnik... niech moje imię Was nie zwiedzie🤪), ale to szczególnie przypadło mi do gustu. Czekam z utęsknieniem, aż dane mi będzie znów odwiedzić te malownicze plaże i miasteczka. Oby nas nie spotkał podobny los. Tymczasem #stayhome #zostańwdomu

    @gymmafia_official
    @strefa_supli_wieckowskiego
    @lunchtimelodz
    @noproblemsportslodz
    @chilli_fitness
    @robsoncars
    @salon_luisseman
    ________________________________________
    @gymmafia_official - fabularyzowana seria krótkometrażowa 🎬
    ________________________________________
    @strefa_supli_wieckowskiego - najniższe ceny i wiedza poparta doświadczeniem 💪🏻😎
    ________________________________________
    @lunchtimelodz - katering dostosowany do Twoich potrzeb 🤤
    Na hasło: Kobi 10% rabatu
    ________________________________________
    @noproblemsportslodz - najlepsza odzież treningowa 🔥🔥
    ________________________________________
    @chilli_fitness - siłownia z duszą, prowadzona przez ludzi z pasją 🏆
    ________________________________________
    @anaboliclife.pl - naj bardziej anaboliczne suple na świecie 😁🤪
    ___________________________________

    @salon_luisseman - hair, style & music 🎶💇🏼‍♂️ ___________________________________

    @robsoncars - najlepsza wypożyczalnia samochodów luksusowych 🚘🚗 #gym #training #arms #tattoed #inkedboy #polishboy #polishgirl #funday #gymlife #gymlove #divertida #muydivertido #bomdia #shoulders #chesttattoo #bodybuilding #bodybuilder #fit #costabrava #fitspo #wakacje #see #animal #freak #spain #goodday #pku #phenylketonuria

  •  142  5  1 April, 2020
  • I'm not a huge sweets person. But I found these choc chip cookies at my local IGA. Only 0.6g protein per cookie. So, of course, they got bought 😂

A few weeks pass by, and these cookies cross my mind. I should give them a taste, see how good they are. 
What I discover is that the rest of my family were one step ahead. Luckily there was one left 🍪🙌 You know they're a winner when those without PKU devour your food too! 
#pku #phenylketonuria #phe #phenylalanine  #raredisease #iem #inbornerrorsofmetabolism #lowprotein #lowproteindiet #chronicillness #metaboliccondition #metabolicdisease #metabolicdisorder #geneticcondition #genetics #geneticdisorder #rare #raredisease #recessive #iga #communityco #glutenfree
  • I'm not a huge sweets person. But I found these choc chip cookies at my local IGA. Only 0.6g protein per cookie. So, of course, they got bought 😂

    A few weeks pass by, and these cookies cross my mind. I should give them a taste, see how good they are.
    What I discover is that the rest of my family were one step ahead. Luckily there was one left 🍪🙌 You know they're a winner when those without PKU devour your food too!
    #pku #phenylketonuria #phe #phenylalanine #raredisease #iem #inbornerrorsofmetabolism #lowprotein #lowproteindiet #chronicillness #metaboliccondition #metabolicdisease #metabolicdisorder #geneticcondition #genetics #geneticdisorder #rare #raredisease #recessive #iga #communityco #glutenfree

  •  84  0  1 April, 2020
  • • Recipe for quick,easy and tasty pasta. •

Total protein: 2.7 grams approximately 
Ingredients:

Half a litre of water 
1 cup of low protein pasta
2 field mushrooms
Half a leek
Butter
Salt

Pasta:

Bring the water to the boil in a pot and add a pinch of salt.
Add the pasta and stir
Cook at a boil for 8minutes or however long it says on the packet. 
Drain away the water and mix a knob of butter and salt into the pasta.
Add the vegetables and serve

Vegetables:

Place a pan on the heat and add a knob of butter
Roughly chop the leek and mushroom and add them to the pan
Stir them and cook for 5 minutes or until the vegetables start browning.

#recipe #lowproteinfood #pkurecipes #pku #pkuproud #cooking #foodforpku #phenylketonuria #phe #phenylketonuriafood #metaboliccondition #lowproteindiet
  • • Recipe for quick,easy and tasty pasta. •

    Total protein: 2.7 grams approximately
    Ingredients:

    Half a litre of water
    1 cup of low protein pasta
    2 field mushrooms
    Half a leek
    Butter
    Salt

    Pasta:

    Bring the water to the boil in a pot and add a pinch of salt.
    Add the pasta and stir
    Cook at a boil for 8minutes or however long it says on the packet.
    Drain away the water and mix a knob of butter and salt into the pasta.
    Add the vegetables and serve

    Vegetables:

    Place a pan on the heat and add a knob of butter
    Roughly chop the leek and mushroom and add them to the pan
    Stir them and cook for 5 minutes or until the vegetables start browning.

    #recipe #lowproteinfood #pkurecipes #pku #pkuproud #cooking #foodforpku #phenylketonuria #phe #phenylketonuriafood #metaboliccondition #lowproteindiet

  •  25  0  1 April, 2020
  • With all this extra time on my hands, I’m finding myself cooking new recipes everyday! Here was a very successful “Veggie Pot Pie.” For once, the low protein pastry crust did not come apart! Comment if you would like the recipe and I will share tomorrow😊 #pkupotpie #veggies #phenylketonuria #veggiepotpie
  • With all this extra time on my hands, I’m finding myself cooking new recipes everyday! Here was a very successful “Veggie Pot Pie.” For once, the low protein pastry crust did not come apart! Comment if you would like the recipe and I will share tomorrow😊 #pkupotpie #veggies #phenylketonuria #veggiepotpie

  •  55  5  1 April, 2020
  • When a local food truck hits your street for their neighborhood pizza tour! 😋🙌🏻 Not only that, they had gluten free crust AND vegan cheese.  Brynn thought it was THE coolest thing she was able to eat food made in a truck.  We always appreciate the little things when it comes to PKU but the current circumstances made it that much sweeter! 🍕
•
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#happymama #515pi #pizzanight #glutenfree #vegan #foodtruck #coronaquarantine #pku #lowpro #phenylketonuria #brynning
  • When a local food truck hits your street for their neighborhood pizza tour! 😋🙌🏻 Not only that, they had gluten free crust AND vegan cheese. Brynn thought it was THE coolest thing she was able to eat food made in a truck. We always appreciate the little things when it comes to PKU but the current circumstances made it that much sweeter! 🍕


    #happymama #515pi #pizzanight #glutenfree #vegan #foodtruck #coronaquarantine #pku #lowpro #phenylketonuria #brynning

  •  45  0  1 April, 2020

Top #phenylketonuria Posts

  • Pats play tonight so of course, wing night came early this week. I could eat an entire head of cauliflower wings in one sitting (don’t judge) but as we all know that is a crazy amount of phe. To stretch the phe and create a more filling meal I breaded the wings this week. Mix wheat starch, @cambrooke_therapeutics seasoned bread crumbs and water. Evenly coat the cauliflower and bake. Toss in buffalo sauce and serve hot. Very low in phe and very filling. #lfg #thisisourhouse #tb12 🐐 •
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#pkufood #pku #pkuculinary #organic #lowprotein #lowpro #eatlocal #shoplocal #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #bostonblogger #foodblog #nhblogger #plantbased #nhseacoast #vegan
  • Pats play tonight so of course, wing night came early this week. I could eat an entire head of cauliflower wings in one sitting (don’t judge) but as we all know that is a crazy amount of phe. To stretch the phe and create a more filling meal I breaded the wings this week. Mix wheat starch, @cambrooke_therapeutics seasoned bread crumbs and water. Evenly coat the cauliflower and bake. Toss in buffalo sauce and serve hot. Very low in phe and very filling. #lfg #thisisourhouse #tb12 🐐 •





    #pkufood #pku #pkuculinary #organic #lowprotein #lowpro #eatlocal #shoplocal #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #bostonblogger #foodblog #nhblogger #plantbased #nhseacoast #vegan

  •  110  4  1 minute ago
  • There are a few newbies to this page and I would like to introduce myself. My name is Julia and I have classical PKU. With the support of family and friends (and sorority sisters during a few rough years in college) I have always remained on diet. Ignorance is bliss because once I get a taste of something it’s all over (anyone else relate?!). My diet is a large part of my thoughts but it is not a large part of who I am. ✨ Most do not understand the weight pku carries and that is the way I choose to live. ✨ Make it look easy. Make them jealous of your delicious low protein and healthy food. Don’t WEAR pku like a billboard. Instead SHOW the world your strength and accomplishments in life as those are truly something to celebrate. ✨ You can choose to struggle under the weight of your cross or bear it with dignity like the lord. 📸: @bylaurenkinton
  • There are a few newbies to this page and I would like to introduce myself. My name is Julia and I have classical PKU. With the support of family and friends (and sorority sisters during a few rough years in college) I have always remained on diet. Ignorance is bliss because once I get a taste of something it’s all over (anyone else relate?!). My diet is a large part of my thoughts but it is not a large part of who I am. ✨ Most do not understand the weight pku carries and that is the way I choose to live. ✨ Make it look easy. Make them jealous of your delicious low protein and healthy food. Don’t WEAR pku like a billboard. Instead SHOW the world your strength and accomplishments in life as those are truly something to celebrate. ✨ You can choose to struggle under the weight of your cross or bear it with dignity like the lord. 📸: @bylaurenkinton

  •  196  59  18 April, 2019
  • My story was shared today by #youngpeople_chronicillnesses ...check it out!! #Repost @youngpeople_chronicillnesses with @repostapp
・・・ Hey, I'm Laura! When I was 5 days old, my parents got a phone call after the routine hospital newborn screening tests.  They were told that they needed to bring me back to the hospital immediately.  On that day, I was diagnosed with Phenylketonuria, or PKU.  PKU is a metabolic genetic disorder that prevents my body from breaking down protein like other people. When I consume protein, it becomes toxic to my brain and body. I obviously don't remember the day I was diagnosed, but I do remember growing up eating food that was low in protein (& in taste), drinking formulas full of amino acids that weren’t any better, and leaving school early to make the long drive to the nearest specialist.  When my "phe levels" are high, or there's too much protein in my bloodstream, anything the brain controls is affected...so, every part of my body.  These high levels can lead to intense mood swings, memory loss, migraines, fatigue, muscle spasms, and more.  But through a strict diet, a pill regimen of 134 capsules each day, and blood monitoring, I'm able to avoid some of these symptoms daily.  Today, my health is good, but not perfect.  I'm so thankful that God has given me my family, friends, doctors, and dietitians to help me along this journey. I’ve learned that life isn’t always going to be fair or easy and it's often out of our control, as PKU is for me. But it doesn’t have to define our lives. While I have to battle with it every day, PKU is part of who I am but that’s only scratching the surface.
#pku #pkudiet #phenylketonuria #pkuformula #formula #metabolicdisorder
  • My story was shared today by #youngpeople_chronicillnesses ...check it out!! #Repost @youngpeople_chronicillnesses with @repostapp
    ・・・ Hey, I'm Laura! When I was 5 days old, my parents got a phone call after the routine hospital newborn screening tests.  They were told that they needed to bring me back to the hospital immediately.  On that day, I was diagnosed with Phenylketonuria, or PKU.  PKU is a metabolic genetic disorder that prevents my body from breaking down protein like other people. When I consume protein, it becomes toxic to my brain and body. I obviously don't remember the day I was diagnosed, but I do remember growing up eating food that was low in protein (& in taste), drinking formulas full of amino acids that weren’t any better, and leaving school early to make the long drive to the nearest specialist.  When my "phe levels" are high, or there's too much protein in my bloodstream, anything the brain controls is affected...so, every part of my body.  These high levels can lead to intense mood swings, memory loss, migraines, fatigue, muscle spasms, and more.  But through a strict diet, a pill regimen of 134 capsules each day, and blood monitoring, I'm able to avoid some of these symptoms daily.  Today, my health is good, but not perfect.  I'm so thankful that God has given me my family, friends, doctors, and dietitians to help me along this journey. I’ve learned that life isn’t always going to be fair or easy and it's often out of our control, as PKU is for me. But it doesn’t have to define our lives. While I have to battle with it every day, PKU is part of who I am but that’s only scratching the surface.
    #pku #pkudiet #phenylketonuria #pkuformula #formula #metabolicdisorder

  •  125  9  10 April, 2017
  • It was a fun birthday thanks to the best hosts ever @stephraq and @justandyrossi 🍍 The food was incredible throughout the entire trip and they even met us at the airport with fresh watermelon (clearly know me well) 🍉 •  We went on a morning bike ride from Redondo Beach to Manhattan Beach 🚴‍♀️ There was an adorable farmer's market somewhere in between with the most mouth watering 🍑 • 🥑 were even 10 for $10 (that's when I realized we weren't in New England anymore). •
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The meals were out of this world and I have a new favorite restaurant- @catch 🐟  The first course was a veggie sushi roll with a cucumber wrap, rather than white rice. The entrée was vegan roasted cauliflower nuggets in a spicy vegan aoli 🌶 For dessert and my birthday treat they brought out three different sorbets with a candle in them and an exploding chocolate cake 🍨 This restaurant is the full experience and a true treat for those following a low protein or vegan diet. •
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We ended the night with an improv comedy show starring Flo from Progressive and riding around bird scooters 🛴 Finally we crashed for the night at the @beverlywilshire and woke up on Rodeo Drive. I still can't believe we did so much in just 24 hours❗️It will be a hard birthday to top!
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#pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku
  • It was a fun birthday thanks to the best hosts ever @stephraq and @justandyrossi 🍍 The food was incredible throughout the entire trip and they even met us at the airport with fresh watermelon (clearly know me well) 🍉 • We went on a morning bike ride from Redondo Beach to Manhattan Beach 🚴‍♀️ There was an adorable farmer's market somewhere in between with the most mouth watering 🍑 • 🥑 were even 10 for $10 (that's when I realized we weren't in New England anymore). •

    The meals were out of this world and I have a new favorite restaurant- @catch 🐟 The first course was a veggie sushi roll with a cucumber wrap, rather than white rice. The entrée was vegan roasted cauliflower nuggets in a spicy vegan aoli 🌶 For dessert and my birthday treat they brought out three different sorbets with a candle in them and an exploding chocolate cake 🍨 This restaurant is the full experience and a true treat for those following a low protein or vegan diet. •

    We ended the night with an improv comedy show starring Flo from Progressive and riding around bird scooters 🛴 Finally we crashed for the night at the @beverlywilshire and woke up on Rodeo Drive. I still can't believe we did so much in just 24 hours❗️It will be a hard birthday to top!







    #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku

  •  125  18  13 June, 2019
  • Happy National PKU awareness day! Through my job working with kiddos with rare disorders, I have met some amazing people. I’ve also met people during the most difficult time in their lives - after delivering the news that their baby has a rare disorder that they have never heard of before. However, it is because of the amazing people and research that telling a parent their child has PKU is not nearly as devastating as it used to be. Because of the treatments available now, I am now able to tell (and show) them that their child can have a normal life. As both a patient and provider, it has allowed me to have a different perspective. This is also what PKU looks like, which now wouldn’t be able to be picked out of a crowd. Awareness of PKU and rare diseases is SO important to be able to continue to improve the lives of these kids (and adults). If you’re able to, please visit npkua.org to donate and/or learn more ❤️❤️
  • Happy National PKU awareness day! Through my job working with kiddos with rare disorders, I have met some amazing people. I’ve also met people during the most difficult time in their lives - after delivering the news that their baby has a rare disorder that they have never heard of before. However, it is because of the amazing people and research that telling a parent their child has PKU is not nearly as devastating as it used to be. Because of the treatments available now, I am now able to tell (and show) them that their child can have a normal life. As both a patient and provider, it has allowed me to have a different perspective. This is also what PKU looks like, which now wouldn’t be able to be picked out of a crowd. Awareness of PKU and rare diseases is SO important to be able to continue to improve the lives of these kids (and adults). If you’re able to, please visit npkua.org to donate and/or learn more ❤️❤️

  •  146  9  3 December, 2017
  • Warming up with a spicy bowl of veggie chili extra spicy. I was feeling the need to meal prep. Too many on the run meals don't do my health much good. The weather cooperated with some snow too. Squash and corn make excellent add ins to the chili. The key is in the seasonings.

#dinner #chili #spicy #squash #corn #superfoods #season #seasoning #plantbaseddiet #plantstrong #mealprep #vegetables #vegetarian #chicagofood #chicagoeats #chicagogrammers #foodiesofinstagram #food #veganofinstagram #vegan #menu #homemade #raredisease #phenylketonuria #liveconsciously
  • Warming up with a spicy bowl of veggie chili extra spicy. I was feeling the need to meal prep. Too many on the run meals don't do my health much good. The weather cooperated with some snow too. Squash and corn make excellent add ins to the chili. The key is in the seasonings.

    #dinner #chili #spicy #squash #corn #superfoods #season #seasoning #plantbaseddiet #plantstrong #mealprep #vegetables #vegetarian #chicagofood #chicagoeats #chicagogrammers #foodiesofinstagram #food #veganofinstagram #vegan #menu #homemade #raredisease #phenylketonuria #liveconsciously

  •  134  12  14 March, 2017
  • 🔹Today, I took the first step into tackling years upon years of mental clarity (or lack thereof), anxiety, forgetfulness, moodiness and headaches. •This is my first of many injections of the newly FDA approved drug, Palynziq. 💉
Palynziq is an enzyme substitution therapy for adults living with phenylketonuria. It will provide my body with the PAH enzyme, which is essential to converting the amino acid phenylalanine into tyrosine. The symptoms listed above are the results of high blood-phenylalanine levels. Phenylalanine naturally occurs in nearly all foods containing protein. (Literally everything 😭)
•Naturally, due to this, my diet has been severely lacking for almost 27 years. In a perfect world of PKU treatment, a low protein diet would be meticulously followed. No animal products of any kind, beans/legumes, or wheat would be consumed. This basically has limited me to a strict fruit and vegetable only diet. •Assuming the success of this treatment, I would be able to consume ALL of the above and hopefully ditch my daily metabolic formula.
•This is HUGE! I can remember sobbing with my mom on numerous occasions and dreaming of a day like this. A day where there was hope and light for a normal life and feeling 110% all of the time.
•This will be a long journey and potentially not an easy one, but I am so thankful for the doctors, scientists and researchers who have worked tirelessly to make breakthroughs in the world of rare diseases.
🔹Let me know what restaurants/foods I have to try when/if this therapy works! 👇🏽
•
•
•
#palynziq #pku #phenylketonuria #phe #biomarin #breakthrough #raredisease #pkustrong #emory #emoryclinic #genetics #humangenetics
  • 🔹Today, I took the first step into tackling years upon years of mental clarity (or lack thereof), anxiety, forgetfulness, moodiness and headaches. •This is my first of many injections of the newly FDA approved drug, Palynziq. 💉
    Palynziq is an enzyme substitution therapy for adults living with phenylketonuria. It will provide my body with the PAH enzyme, which is essential to converting the amino acid phenylalanine into tyrosine. The symptoms listed above are the results of high blood-phenylalanine levels. Phenylalanine naturally occurs in nearly all foods containing protein. (Literally everything 😭)
    •Naturally, due to this, my diet has been severely lacking for almost 27 years. In a perfect world of PKU treatment, a low protein diet would be meticulously followed. No animal products of any kind, beans/legumes, or wheat would be consumed. This basically has limited me to a strict fruit and vegetable only diet. •Assuming the success of this treatment, I would be able to consume ALL of the above and hopefully ditch my daily metabolic formula.
    •This is HUGE! I can remember sobbing with my mom on numerous occasions and dreaming of a day like this. A day where there was hope and light for a normal life and feeling 110% all of the time.
    •This will be a long journey and potentially not an easy one, but I am so thankful for the doctors, scientists and researchers who have worked tirelessly to make breakthroughs in the world of rare diseases.
    🔹Let me know what restaurants/foods I have to try when/if this therapy works! 👇🏽



    #palynziq #pku #phenylketonuria #phe #biomarin #breakthrough #raredisease #pkustrong #emory #emoryclinic #genetics #humangenetics

  •  174  21  19 February, 2019