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Social life part two: friends PKU never held me back from joining new clubs, sports teams or making friends. I prefer to only disclose my PKU on a need-to-know basis. This allows others to get to know ME, NOT my disorder. Your child does not need to be a walking billboard. Don’t get me wrong, I am not ashamed of PKU but strive not to let it define me. You and your child will find ways to communicate with others when you feel ready. •
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I can understand parents’ concerns about the effect of PKU (or another metabolic disorder) on their child’s social life. At this point, it is your life. You pour an absurd amount of time and energy into planning and preparing so your child may live a healthy life. ‼️ Good news- it gets easier. As your child grows, they will develop independence. Let them order at the restaurant. If it comes out wrong, they will learn quickly how to communicate the limitations of the diet effectively. Help them prepare low pro food to bring with them to social events. Provide support but let them experience these little challenges in a safe, controlled environment. •
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I have been so blessed with a wonderful friend group through the various stages of life. These friends have been some of my biggest support systems, even to this day. Sometimes friends and family worry more about my diet than I do. They have seen my biggest challenges and been there through it all ❣️ From high school sports teams ➡️ homecoming dances ➡️ prom ➡️ college ➡️ nursing school ➡️ sorority ➡️ young, single professional ➡️ grad school ➡️ marriage ➡️ making a home, PKU has not made a difference. •
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#pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku
Working with elevated levels all week after a viral illness that quadrupled my levels and then delicious brussels and artichokes on Easter Sunday. By mid week all I wanted was a large, veggie loaded green salad. Fresh rolls satisfy my veggie cravings but are still super low in phe. There are 70 mg of phe for two rolls stuffed full with green leaf lettuce, cucumber slices, a scoop of low pro noodles with coconut aminos and fresh mint leaves. Add whatever veggies you want and top with sweet chili sauce for all the flavor and fresh veggie feels. •
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#pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku
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
I want to start a mini series to share a few aspects about what PKU is. My hope is to provide insight for new parents, family and friends. PKU stands for phenylketonuria. It is a genetic disorder in which the individual is lacking an enzyme to metabolize one amino acid in protein. If treatment does not start soon after birth, and continue throughout the lifetime,mental delay, mood disorders and seizures will develop. The gold standard for treatment is following a low protein diet. The daily protein tolerance depends on gene activity and varies for each individual. If this diet is followed very carefully the individual is able to live a full and “normal” life. Please let me know what questions you have about PKU so I can share with others. •
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#pkufood #pku #pkuculinary #organic #nongmo #glutenfree #lowprotein #lowpro #eatlocal #shoplocal #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #bostonblogger #foodblog #nhblogger #vegan #vegetarian #organicpku
I was taught to celebrate my accomplishments rather than my rare disease. The “disease” I have is simply a diet I follow and have grown to love. ✨ PKU does not define me ✨ My career defines me. My family and friends define me. My tennis and golf game define me. You get the picture. I may be a stronger person because of this “rare disease” but it is not who I am. ✨ Never forget the golden rule of rare diseases, “there are PKU patients and there are patients with PKU”. Which are you?
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Also, shout out to @lillypulitzer for “I heard you”. Little did they know that it stands for so much more
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#pkufood #pku #pkuculinary #organic #nongmo #glutenfree #lowprotein #lowpro #eatlocal #shoplocal #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #bostonblogger #foodblog #nhblogger #vegan #vegetarian #showyourstripes #rarediseaseday
These spicy jackfruit tacos will keep you warm even with a massive ice storm coming in. ❄️ Adapted @hotforfood roasted poblano jackfruit tacos to include a low protein adobo sauce. Check out her blog or YouTube channel. She has several easily modified, vegan options. Now I’ve been eating jackfruit taco salads for lunch every day this week and am loving it! The poblano peppers add a nice level of heat on these 14 degree days I was able to make a high protein option for my carnivore hubby with half ground chicken and half jackfruit. Serve with your favorite low protein wrap. Pictured here is @sietefoods chia seed cassava wrap. Modified, low protein recipe on the blog with phe content included. Link in bio. Stay safe this weekend!
For 34 mg phe/serving, I bring you watermelon poke to serve with low protein poke bowls. This recipe is quick, healthy and fun to modify for the whole family. The watermelon base with poke sauce is a perfect combination to recreate the very trendy tuna bowls. Add all of your favorite garnishes to make a fresh and flavorful meal. My favorite toppings are cilantro and crispy, fried scallions. Serve over low protein rice, riced cauliflower or half and half. Link in bio, on the blog now!
It’s National PKU Awareness Day! Pictured here is the PKU lifeline. So fortunate to have access to this pricey medical treatment. #toasttopku @nutriciametabolics •
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#pkufood #pku #pkuculinary #organic #nongmo #glutenfree #lowprotein #lowpro #eatlocal #shoplocal #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #bostonblogger #foodblog #nhblogger #plantbased #nhseacoast #vegan #christmas #vegetarian