Many thanks to all who attended our session @ESPKU conference . Our interactive workshop on the older adult patient experience: "Starting the Conversation: a panel for adults with PKU, by adults with PKU." was a hit!
Couldn't have done it without @soheb@GirlGreenDress@NSPKU
Will have data results asap
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.
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.