#espku2023 — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #espku2023, aggregated by home.social.
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My notes on the Rare Minds workshop at NSPKU 2024 which discussed PKU and mental wellbeing. This workshop grew out of the amazing response to the Starting the Conversation workshop at ESPKU 2023.
#LivingWithPKU #RareDisease #PKU #LowProtein #NSPKU2024 #ESPKU2023 #PKUCommunity #MentalHealth
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I'm going to be sharing some photo album of the slides at the ESPKU event. This will be a thread! 🧵
These slides are all on Google Photos, but if you want the photos on another service (like Outlook or iCloud), let me know and I can try and get them shared.
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A new contender - Prekulab - have two new products:
LNAA series - you can have *up to* 80% normal food, and the rest is tablets/powder.
AA series - up to 20% normal food, 80% tablets powder.I believe the person said the LNAA total tablets amount is body weight in kg/2. For example, for me I’m 80kg, so I’d have 40 tablets a day.
Spread that across the day, it would probably be 10 tablets in the morning, 20 in the afternoon, and 10 in the evening. Interesting!
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IT’S COMING HOME!!
IT’S COMING!!
BLOOD TESTS COMING HOME, IT’S COMING!!
Now, these are prototypes, BUT!
* Result in 2 mins
* Records in app
* Results get sent automatically to doctorsYour move, post box 📮♟️
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Professor Anne Green did a talk on Sheila (and Mary Jones’) life story of PKU. The talk was great, but the book is phenomenal and I strongly encourage folks to buy it and read it.
Sheila: Unlocking the Treatment for PKU https://amzn.eu/d/3gLpZ1z