Liste des hashtags les plus populaires par sujet #PKUSTRONG

Celebrated a wonderful couple at their beautiful wedding this weekend! And they were so incredibly sweet and had the caterer make me my own menu! I was so touched at their kindness and that they thought of me! To start, I had canapés of roasted veggie cups with an Asian slaw in cucumber cups, then a courgette noodle salad with truffle oil and edible flowers then roasted aubergine and peppers - not pictured was strawberries and rhubarb in compote it was SO delicious, so #pkufriendly and just was such a lovely day ❤️❤️ #conqueringpku #pku #phenylketonuria #pkufood #pkulife #pkudiet #pkustrong

Aaaand here we are, December 3! Today is PKU Awareness day and let me just say I love a very very VERY special boy who has PKU. This photo explains perfectly what it is and how it is managed. One of the biggest challenges with Jeremiah, right now, is making new foods that he will eat. I try to switch up his meals as much as I can so that he doesn’t get tired of anything but it’s so hard because he does have his preferences. One of his favorites are potatoes. Whether it be mashed, baked, diced, or fries. But after a while he’s over them. I make his medical food and sometimes he wants nothing to do with it. Which is tough because I don’t like wasting it considering how expensive it is. Insurance is a huge help and we are so blessed that Jeremiah is covered when it comes to his food and formula. He’s currently at 260mg of phenylalanine (Phe), a day. We do finger pricks every 2-3 weeks and his phe levels are usually consistent between 4-5. Although, if he gets sick or has a fever it could raise or lower his levels. Some days his mood is all over the place and I wonder whether it’s because he’s in that “terrible two’s” stage or because his levels may be affecting him in a way that I cannot see physically. I say that because I have talked to adults and young kids with PKU that say their levels affect their moods. But overall Jeremiah does SO WELL with his diet and I can only say that I am so lucky to be his mommy because he’s an amazing kid. He loves his fruits and veggies, doesn’t try to eat what he’s not allowed to have (meat, dairy, eggs, nuts, beans, etc. cuz the list goes on), he is fearless, loving, adventurous, curious, and of course, mean but sweet! Such a boy. I hope he grows up knowing that his diet is the only thing different than other kids and he can achieve any goal he has just like anyone else. I will make sure that I do my part to show him that! My special boy I LOVE YOU SO MUCH! I’m proud of my little pku’er #pkuawarenessday #lowproteindiet #phenylketonuria #pku #teamjeremiah #pkustrong #hesawarehesrare #Dec3 #pkumom #pkuproud

The party has started!! #autismadvocate #autismspectrum #autismspectrumdisorder #autismlove #autismspeaks #autismrocks #autismfamily #autismlove #autismacceptance #autismparent #ilovesomeonewithautism #autismstars #specialneedschildren #autismproud #specialneedsawareness #autismawareness #autismadvocate #autism #nonprofit #charity #fashion #royaltyenroute #travelqueen #OutoftheBlue #kindnessmatters #randomacts #pkustrong #rarejewel #rarequeen

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small motivated group setting focus on healthy eating realistic goals you set workout from home easy access (you can start today!) From anywhere Whose ready to join me? I sm keeping my first challenge group small, so now is the time if you have been curious but you are afraid of getting lost in the shuffle of a larger group setting!! I have 7 spots left in my challenge group that kicks off in April!! I cannot believe how fast they are filling up!! Leave me a if you are ready to spring into fitness!! #mom #momswholift #weightlossjourney #weightloss #healthyliving #healthychanges #healthylifestyle #betheexample #doitfortheafterselfie #bethechange #onedayatatime #babyweight #postpartum #postpartumjourney #toddlermom #girlmom #mommyandme #mommytime #pkufamily #pkustrong

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

Jeremiah loves strawberry sherbert! #pkustrong #dairyfree

Tuesday is normally a gym day for me, however I managed to tweak my lower back a little while awkwardly carrying rubbish down some stairs yesterday. I didn't have a full on spasm thankfully, but I was in ALOT of pain. I did a lot of stretching, walked around a lot, plus spent most of the night with heat packs. This morning I was almost back to normal. I'm still tender, and can't reach/stretch too quickly. I'm really really thankful for stength training I've been doing as well as the yoga classes I've been attending, because I'm much stronger than I used to be and have used almost every stretch I had learnt for lower back and hips throughout the evening and fully believe these things have helped me to recover even more quickly than I ever have from a back injury. Perrin has decided that tonight is the night to sit on me and comfort me... I wouldn't let him yesterday Also shout out @wonderwomenfitness1 for being so understanding and easy going regarding this and life (holidays) getting in the way. Can't wait for the next session in two weeks! . . #huaweip10 #leica #aucklandlife #fluffbutt #kitty #kittycuddles #gymbunny #selfie #selflove #selfcaredaily #recovery #healthyliving #healthandfitness #girlscanlift #pkustrong #fitnessgirl #nzfitness #happyplace

Today is #RareDiseaseDay and I’m celebrating! Yes, I have #phenylketonuria but this year I’ve also accomplished the two largest #PKU goals I’ve ever set. - I’m 30 weeks pregnant (with my diet in absolute control to keep our baby girl healthy and growing!) ...And on January 15, I launched my blog #pkuforlife to share my story. - Both of these feats have taken A LOT of work; I am truly proud. It has been the most challenging year of my life, with a lot of sacrifice and emotion along the way...but I’m thrilled to have these major milestones to celebrate! - Being a part of such a rare community has had a tremendous impact on who I am today. —even through the years I spent off diet. The support I’ve received simply in sharing my story on social media (and now my blog) has blown me away and keeps me strong through it all. PKU is not easy; every day is a challenge, and the littlest things (eating, simply existing) take work! But being connected to (and learning from) so many other PKUers has made all the difference. - A #raredisease is defined as any disease, disorder, illness, or condition that affects fewer than 200,000 people in the US. PKU is detected by newborn screening and affects about 1 in every 15,000 people. Currently, it’s estimated that there are only 16,500 people in the US living with it. ...But PKU is just 1 in about 7,000 rare diseases. And while each rare community makes up a very small part of our population, together, 1 in 10 Americans live with a rare disease of some kind. (1 in 10!) 90% of these rare conditions go without an approved treatment or much support to invest in the research that could lead to those breakthroughs. - Rare Disease Day gives us a chance to come together and be a part of a larger community. The more we share our stories, connect, and raise awareness...the closer we are to making a difference. I am SO happy to see so much of this popping up on my feed today and am forever grateful for the support I’ve found. I’m excited for what more 2019 has in store and to do my part in advocating progress! #showyourrare #rarediseaseday2019 #strongertogether #PKUproud #showyourstripes #nevergiveup #pkustrong