What is Large Neutral Amino Acid (LNAA) treatment?
this is an additional treatment for #PKU which is used in certain European nations. In my book, "Living with PKU," I discussed LNAA and you'll find an excerpt on my blog: https://pigpen.page/what-is-lnaa/
Trying to do better with cooking food for Lucy after the #ESPKU2023 conference. Taking some recipes directly, starting today with the Fate Birmingham Balti, recipe here: https://www.vitafriendspku.co.uk/pku/recipe/fate-birmingham-balti
Served with homemade sweet potato chips, 0 exchanges. The recipe made a good amount, still 2 portions left over for the fridge/freezer to eat another day. Vary the amount of red chilies depending on how spicy you want it. Lucy said it was "yummy" and she's looking forward to eating it again. #PKU#Dinner
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.
We're going to need a year round fully catered option for #PKU. Back home from the #ESPKU2023 conference, first meal back and Lucy has already burned her finger on the pan. She's now banned from the kitchen.
Wish I could have been at #ESPKU2023 this year, especially being so close in Birmingham! However, I'm a bit too pregnant for adventures at the moment (34 weeks) 😂😍
Thank you for everyone who went for the updates! I bet it was awesome 😍😍💖
And that’s the ESPKU done! I had such a great time!
Many thanks to @Chloeormerod@poconnor@skat plus others for chatting with me and making the event that much more better!
I also have pictures of the slides of the latest drugs that, once I’m back home, I’ll make some online album and share the album for folks who couldn’t attend to see 👍 ( @ClairTheGinger )
Thanks to COVID vaccine innovations, the technology used to kill of Covid is going to be used to generate working PAH enzymes in the body. It’s currently in very early days, but it seems very promising given it’s based off the COVID foundations…!
Some new GMP sachets from @Nutricia - these are the lowest calorie GMP mixes on the market (the mix-in one has no taste whatsoever - they gave me a spot test to tell the difference and I failed it).
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.
Talk by Tobias Hagendorn about the gaps in PKU patient healthcare.
It was good. I was worried it was going to be an “old man yells at young women” talk but it does raise good points, such as the awkwardness of clinical appointments regarding pregnancy as well as the fact that pku men aren’t often in the picture and may not even have that much care.
I can say all those points rings true. I’m not sure if some of the proposed ideas are good or not as I’m not an health expert, but I’m glad this is being addressed.
I’ve heard lots of stories from pku women about how awful their clinical appointments are as they get asked very personal questions in the name of being educated about unplanned pregnancies and urgent strict diets. It can be much, much better.