-
We are very hopeful for your treatment for
#PKU! -
I think there is a whole section of the adult
#PKU community that are not actively involved on here. I have spoken to a few at the adult clinic that are quite happily off diet long term, still followed up, just putting it out there!! -
Thank you for not giving up!!! We really need hope for a brighter future for all people living with
#pku. -
This is from 2012 highlighting research needed to investigate effects of a lifetime low protein diet. Heading into an uncertain future is one of the scariest things about PKU right now. We need more adult research specifically into ageing with
#PKU pic.twitter.com/KPHFn5VBfJ
Prikaži ovu nit -
Sharing my post-gym selfie to show my
#PKU doesn't stop me from being a badass! Life can be normal, fun and you can set yourself challenges and smash them! I won't let my PKU stop me or hold me back! pic.twitter.com/y2gHn3isaW
-
WATCH: Delighted to be elected as Vice Chair of the All-Party Parliamentary Group on Phenylketonuria #PKU, alongside our fabulous Chair,@LizTwistMP. Looking forward to working closely with cross-party colleagues to deliver the changes people living with PKU need.@NSPKUpic.twitter.com/uJquiApJdZ -
So here it is reality 1st photo is a boy who could only have 9 grams of protein a day which meant only 67g of chips at McDonald's The 2nd a boy who is on 13 grams which meant 2 vegan dippers with the 67g Look at the difference a few exchanges makes that's why he needs Kuvan
#pku pic.twitter.com/60LflBYnRq
-
@nicholabrehmer Welcome! There are a bunch of USA#PKU folks here, too.@NPKUA_Info@TennesseePKU@MNPKU@NECPADOrg@KevPKULife -
#PKU (whether you're a parent or PKUer) pic.twitter.com/v3n3eTAG6z
-
Thank you to my MP
@Jeremy_Hunt for taking on the role of the Government Party APPG Officer for our APPG for PKU. I really appreciate your interest in the issues of#PKU -
That’s how I feel when having
#PKU kicks my Butt!
pic.twitter.com/8wdsUrfjnS
-
-
Students with
#PKU: Don't miss your chance to apply for funds to advance your undergraduate studies. Applications for the Guthrie-Koch PKU Scholarship are due Feb 15. Details athttps://pheed.me/2rKQzJc pic.twitter.com/GmqB7Dg51G
-
-
Just ventured back into Starbucks and not only did they use my low protein
#PKU friendly milk, but this time they even charged me less than half price for doing so!
Oh, man!
I'm beginning to love this place! -
1 month of
#orkambi done
Every sachet that's opened still makes me feel incredibly greatful/emotional. Never will we forget the momentous effort it took. Nor will I forget the other families still fighting to save thier children & get access to meds.#TriKafta#PKU only the best pic.twitter.com/yYeBjVGLwO
-
That’s my letter posted to
@BorisJohnson asking him sort out#kuvan for#pku like he promised he was going to do during his election campaign. Would really like to know if there has been any progress with this issue@MattHancock pic.twitter.com/Rp7afblLJT
-
It's coming ! Countdown to World
#RareDiseaseDay 2020#PKU is proud to support#equity 4 lifesaving#nutrition with#medicalfoodspic.twitter.com/TXsh94eUpA
-
And control, gaining control over somebody, like my father used to try on me. and the girl from
#PKU who killed herself cuz her bf tries to control her. They both are in the university's student organization, and they have already learned about climbing up.
Čini se da učitavanje traje već neko vrijeme.
Twitter je možda preopterećen ili ima kratkotrajnih poteškoća u radu. Pokušajte ponovno ili potražite dodatne informacije u odjeljku Status Twittera.
