There was a great panel talk by @poconnor about living with PKU and sapropterin.
One of the questions was "are you doing well with phe levels", and one of the points was that how life changes do have a severe impact on phe levels.
As someone who moved house quite recently AND had a job change, I am proof that big life changes as well as changes to routine absolutely do mess up phe levels.
Last - but surely not least - @poconnor has released a new update to her newsletter. Updates on PKU Community as well as her upcoming book "The Red Hat Stories"
Bon matin!
Une donnée extrêmement importante pour nous tous.
"Selon le rapport Meta's Widely Viewed Content, 95,2% des vues aux États-Unis au cours du quatrième trimestre de 2023 n'incluaient pas de lien vers une source extérieure à Facebook."
C'est exactement pour ça que je publie de moins en moins de lien vers mon blogue, vous ne les verriez pas de toute manière. Et c'est aussi pour ça que je vous encourage à vous abonnez directement au blogue. 😁
Dans deux jours, c'est le mois de la sensibilisation à la phénylcétonurie qui commence. Ne comptez pas sur Facebook ou Instagram, abonnez-vous directement et passez le message! 💙
So, I dreamt that I underwent a surgery where I was implanted with a gadget just a little smaller than a credit card and that was supposed to drastically decrease the amount of phenylalanine I had in my body. 😳
This feels like the end of a very long, hard nearly 3 year journey (started pre-contraception diet in 2021!) but I'm so damn proud of myself for getting through it, and to come out the otherside with a beautiful, happy and healthy baby.
No more carrying around extra water, powder everywhere, bag explosions, spilling on carpet, feeling sick from being too full, midnight forcing to get last one in, but just most importantly NO MORE DRINKS! 🥺
Just took a quick look at #Bluesky in case I would have the surprise to find people from the #PKU community.
Answer: Nah.
At least, Bluesky would have been a better choice than anything related to #Meta or even #Twitter, but no. There's no movement.
I have pretty much left Twitter, I'm progressively leaving Instagram and I do everything I can to encourage people to subscribe to my blog so they can stop relying on Facebook.
The last result was 413umol/L - looks like creating had little effect on my phe levels. (Well, my levels before were 300, so could be? But before that it was 481 and 556, so… 🤷♀️)