16 months of #GLP1 my boy is like a different lad! Not just because of the weight but his smile, the clothes, the confidence...
the change is more than just physical and his mental health is improving. We self funded, his BMI was 47, he was pre-diabetic, #pku and had other health challenges
Help us transform patients experiences into scientific evidence. If you have #PKU or are parent or carers of person with PKU fill this survey.
Persons with #PKU participated in our Spring Meeting. Everyone was impressed with low protein dishes served last weekend. Thank you to the team at Clarion Hotel in Copenhagen and our hosts Danish PKU Association.
New European PKU guidelines (May 2025) recommend that Phe results should reach patients within 2 working days after the lab receives the sample.
Many families still wait longer.
Fast results = faster diet decisions and better Phe control.
#PKU #Phenylketonuria #RareDisease
MAGIC Clinic has ethics approval for JNT517-301. A phase 3, double-blind, randomized, placebo-controlled trial using an oral drug in adults with PKU. Canadian patients can register at viperclinicaltrials.com to get more information. #pku #canada #alberta
"Inspirational story that marries motherhood and science," - writes the reviewer at 📚 BookLife by Publishers Weekly about my memoir "When the Baby Is Not OK: Hopes & Genes". Grateful for their review here: booklife.com/project/when... #Momsky #Booksky #RareDisease #Genetics #SciComm #Books #PKU
🦷 Dental care in #PKU is very important. Remember Phenylketonuria itself doesn't damage teeth. Frequent meals or snacks,regular use of protein substitutes (often acidic), higher carbohydrate intake, irregular brushing or flossing and skipping dental check-ups influence bad dental condition in PKUs.
Moving with PKU Soheb's Story: Moving out when you have PKU can feel incredibly intimidating "If you are considering moving out into a new place, there are a few things you'll need to think about carefully" Find out more: link in bio www.pigpen.page
To all PKU folks - Share your story!
Pauline O'Connor has got some great PKU stories on her blog - one from yours truly 🧐 - and you can add your story into the mix as well!
Visit this link to find out more: www.
pigpen.page/share-your-story-2/
#phenylketonuria #phenylcetonurie #pcu #pku
BioMarin's PALYNZIQ Receives FDA Approval for Adolescents with PKU #United_States #San_Rafael #BioMarin #PKU #PALYNZIQ
Invite to presentation by J.J. Brown on Rare Disease in the US Today: Real Lived Experiences - with COSE and Post U. Feb 27 at 6PM ET, live for #RareDiseaseDay
Excited to present "Rare Disease in the US Today: Real Lived Experiences" at 6PM ET today, with COSE ~ Join us live for this online event! True stories of superhero players in rare disease advocacy, movies, books + more. #RareDiseaseDay #Genetics #MedSky #RareDisease #NarrativeMedicine #PKU #Momsky
Phenylketonuria (PKU)
#Phenylketonuria #PKU #MetabolicDisorder #AutosomalRecessive #GeneticDisorder #iPrkashMishra #NewbornScreening #GuthrieTest #Hyperphenylalaninemia #PediatricHealth #LowProteinDiet #Sapropterin #MaternalPKU #MedicalEducation #NursingNotes
Phenylketonuria Market Set to Thrive by 2034 with New Therapies and Increased Awareness #None #BioMarin #PKU #Phenylketonuria
Do adults with early-treated #PKU show altered brain ageing?
MRI-based brain age modelling reveals a higher insular brain age gap (~6 years) despite early treatment — pointing to region-specific vulnerability rather than global ageing.
🔗 doi.org/10.1002/jimd... @emmavardy2.bsky.social
PKU is more than phenylalanine levels. Many people with PKU experience digestive issues like constipation, bloating, reflux or stomach discomfort. Gut health is part of PKU care.
#PKU #GutHealth #RareDisease #adultpkuawareness
At the European Parliament’s “It’s Rare For Me” exhibition, E.S.PKU stressed that timely diagnosis and lifelong care matter. Many adults with #PKU still lack specialist follow-up, proving rare diseases are not “solved” and unmet needs remain across Europe.
#adultpkuawareness
"what if X had whatsapp" meme with the character Mr X from Pokéumans by pokemonmanic3595, who's a mewtwo and he's got a badly drawn X in his forehead, because he's Mr X, and he's gotta have an X somewhere. at the left, you can see an iPhone 4S with whatsapp opened, you can see a list of characters from the story and they have some things to say to mr X Brandon (Lucario): FUCKING KILL YOURSELF Starr (Lucario, but with darker fur): FUCKING KILL YOURSELF Rikuto (Lucario, but green): I'M GREEN Mindy (Lopunny): JEFF BEZOS HAS 121 MILLION DOLARS. THE POPULATION OF EARTH IS 7 BILLION PEOPLE Azula (Milotic): FUCKING KILL YOURSELF Dean: Nothing (in reference that he literally doesn't exist anymore)
Featuring the iPhone 4S. #Pokeumans #PKU
Today is #WorldCancerDay and we join #UnitedbybyUnique campaig. When a person with #PKU is diagnosed with cancer rare becomes unique. It's essential to inform your PKU doctor about cancer diagnosis. It's important for oncologists to cooperate with PKU clinics.
Dünyadan Esintiler-122
#osteoartrit #diş #alzheimer #angelman #pku #pankreaskanseri #drhasanönal #dünyadanesintiler
👇🏻
“Ah ha! It’s a puzzle!’ I exclaimed, “We need to figure out which one of these bottles is The Key.” “We already know the last bottle is Frozen, thanks to Mike,” pointed out Nathan as Mike trembled in his ice prison. “Confusion is third, so that means…” I mumbled. The five of us all studied the scrap of paper and it took us a few minutes before we finally put the puzzle together. (Authors Note: Since I want to see if the readers can solve the puzzle themselves, I will add this scene of us solving the puzzle ourselves once enough people get the right answer. So, remember to note me your answers!)
sheet of paper where I tried to solve the last puzzle
Well guys, after a long wait, Chapter 15 is here for real-real not for play-play! Once again I apologize in advanced for making you guys wait, but I really hope you enjoyed all of the work I put into this! Please critique and comment and fav and download and view! So, begins the PokéDimension saga! We've arrived in the PokéDimension! It's up to us to stop Mr. X! Will our training be enough? Can we make it to the Legendary Isles? Will we be able to get to Arceus first? Can we really trust Dean? Of course we can, but you'll have to see what happens next time on "Pokéumans Chapter 16 - Revelation Revolution" DO NOT SOLVE THE PUZZLE, IT IS WRITTEN INCORRECTLY
ARE YOU SERIOUS #pokeumans #PKU
iPhone 4S
It's so over guys, the iPhone 4S wasn't even referenced once in Pokéumans chapter 15 by pokemonmanic3595 www.deviantart.com/pokemonmanic... #PKU #pokeumans
“Um, excuse me…” I started. His wings flapped open and he turned to face me. “IMPOSTER!” he cried. “W-What?!” I stammered, quivering nervously. “I can see into the past and the future. You are not of this world, as well as not one of this species. You are not a true Pokémon…aren’t you…” he said accusingly. I didn’t know what to do, he could see into my past. I couldn’t deny the truth. “No…my friends and I are not from this world, and…we all used to be humans…”
holy fuck #PKU #pokeumans
