Список из самых популярных хештегов по теме #PKUAWARENESS

Meet my adorable Boston Marathon #running4rare partner Camryn (Cam)! Cam & I both have PKU, a rare metabolic disorder where our bodies aren’t able to break down protein. I looked up to so many of the @bostonmarathon runners as a little girl & hope to offer similar inspiration to future runners with PKU & other rare diseases. Please check out the link in my bio to donate ‍♀️ #pku #pkuawareness #rarediseases #teamnuun #nuunlove #bostonmarathon2019

In light of National PKU awareness month, I’m posting this pic of my adorable little dude to give you a little insight into his #pku journey. Basically, my son will live primarily on expensive medical formula for the rest of his life (or until a cure is found). An untreated child with PKU can lose 4 IQ points each month and suffers severe and irreversible intellectual disabilities before reaching toddlerhood. PKU is one of 28 inborn errors of metabolism that require specialized medical food to live, but most insurance companies refuse coverage on medical nutrition despite it costing at least 8x as much to care for an untreated patient over a lifetime. Without insurance coverage, families struggle to supply the the out of pocket medical food cost to keep their children healthy. The “Medical Nutrition Equity Act” was introduced to the House this month, co-sponsored by @repbrianfitz and @repkennedy, and aims to make insurance companies validate the need for medical nutrition by including it in their coverage. If you’ve read this far and feel compelled to action, you can do so by contacting your representative through the link in my bio and voice your support the act! Stetson is an enormous joy and is on a healthy trajectory thanks to our early awareness and support from the great team at the University of Iowa children’s hospital. We’ve established a good rhythm with him this first several months and he’s only peed on me twice! He’s starting to smile regularly I need to photograph this cute face more often! #stetsonsteele #medicalnutritionequitynow #pkuawareness

She is worth every teary PKU “pre-con” day when I didn’t think her life was possible, every time I passed on social gatherings and eating out with friends because my phe levels just couldn’t handle it, every time I questioned if wanting my own baby was selfish, every blood draw, every hold-the-nose and try to chug formula without puking (and every time I chugged more formula again after puking), every battle with pharmacy and insurance companies to get what was needed to keep her healthy, every panicked phone call to the dietician and doctor, and every high-risk appointment. She’s worth it all & so much more ❤️ I’m getting an early start...PKU Awareness Month starts tomorrow (it’s gonna be May...sorry, I had to‍♀️) and awareness of maternal PKU this year means a lot to me after hearing so many young PKU women share with me that they want kids and just don’t know how it will be possible. It is. And whether you’ve prepared your body for months prior to pregnancy or you find out you’re pregnant and are getting healthy now, what a lucky kid to have a mama that loves them so much before they’re even born to do what’s needed to keep them safe. I encourage you to spread awareness this month about this (small) piece of you in whatever way you’d like...I think awareness is so important for acceptance and support! #PKUAwareness

Thankful for the opportunity to be this little guys momma! You’ve taught me so much in the last 12 days. And while your body can’t process protein, you’re still perfect in our eyes little one #pku #phenylketonuria #pkuawareness #raredisease #lowpheotheo #pkutiepie #pkuwarrior

Today our precious baby girl turns ONE!! As first time parents we knew we'd be in for a lot of firsts, but one year ago, while we were sitting in the hospital holding our perfect little new baby girl, we never expected our year of firsts would also include, getting a phone call from the clinic saying our baby tested positive for something on the newborn screening, flying to Vancouver not knowing what to expect and then being told our daughter has Phenylketonuria. Those first days being in the children’s hospital, our baby being poked and prodded by doctors and nurses while cash and I stood there, helpless, wondering what PKU was all about and if our little girl would be okay. This first year has taught us how tough we are as parents, and that we can get through anything! Along with all the other firsts a baby goes through in the first year, we as PKU parents had to deal with blood draws, balancing breastfeeding with formula, increasing protein, decreasing protein, the first illness where her levels spiked, and how scary that was. I never imagined all the struggles that go along with learning to measure, portion, weigh and record everything your child eats. All the tears we would shed in frustration, guilt and the anger we would feel. One year later, one year filled with so many firsts, I can say I wouldn't change a single thing about this last year. Although those first days after diagnosis I felt like this is an impossible mountain to climb, I'm proud to say we climbed that mountain, thanks to the love and support from our family and friends, I know our battle is not over but each day it gets just a little bit easier and we can sleep at night knowing Carver will be just fine!! We love you so much Carver! Happy first birthday!! #birthday#carverspkujourney#pkuawareness#weloveyou#oneyearold#firstyear#baby#cutest#wildchild

Cutest cousins ever#easter#carver&sloane#babiesofinstagram#thecutest#pkuawareness#carverspkujourney#impossibletogetapic

✨My Wish For You✨ . My wish for you, baby girl, is that you always feel loved. That you grow up knowing that you are never alone & that you are the most amazing person. I hope that you are confident, that other people’s opinions of you don’t stop you from being you. I hope you know just how powerful you can be & that you can be anything you want to be. . My goal as a mother is to show you that women are strong & powerful. That dreams do come true & that hard work pays off. I hope you can see that you are so important & that you give me the strength to work hard towards my goals you are my motivation & my world! . You are so loved . #momlife #toddlersofinstagram #chemicalfreehome #healthandwellness #naturalmama #goals #daughterlove #essentialoils #doterra #doterraessentialoils #mommyandme #diffuser #bossbabes #health #mywish #soloved #chemicalfree #myworld #plantmagic #plantmedicine #naturalbaby #naturalhome #naturalproducts #mywholeheart #cleanhome #family #wellness #wellnessjourney #pkuawareness #fortstjohn

Vera has a rare metabolic disorder and will for life (unless someone finds a cure). Jesse and I had never heard of it until we got The Call from our adoption agency. (If you have biological babes who were born in the States, they were likely tested for it on their newborn screening.) It’s something, eventually, everyone in her world (friends, teachers, other parents, camp counselors, etc.) will need to know about, since she has a very strict diet and it plays a role in her life every day. (She’ll never have a burger but tonight we made super yummy PKU friendly pizza!) We figured we’d share a little bit about it for National PKU Awareness Day (tomorrow, December 3rd). There’s definitely been a learning curve, but we’re so grateful it all seems routine now. Treating Vera’s PKU is our new norm. You can read all about Vera’s PKU over on the blog. Link in profile. #weloveyouveramuch #pkuawareness

We walked down what has gotta be the most charming street in DC today on the way to our AirBnB. ❤️My sister and I are here to lobby our representatives to support the Medical Nutrition Equity Act. This bill would make it so no one could deny us coverage for our metabolic condition PKU. Currently it’s decided on a state by state basis.