For folks who have used PKU Calculator - I've been thinking about winding down the diet management side of the app for quite some time now, as well as winding down iOS and Android apps.
I'm super proud of said apps, but the truth of the matter is that these apps do take a long time out of my life to maintain. If I had a team of developers and testers, then this would be easy. That, and Apple/Google bureaucracy has killed the fun for me.
It’s important to not overeat and looking at calories is a way to achieve that.
But when I take a look at the total amount of calories of just the PKU formulas, it’s a meal. (550 calories). 😒
The only way I found dealing with that is intermittent fasting (time restricted window), eating only 2 meals of food and carefully spread formulas during the day.
One thing I always get stuck on when eating with #PKU is remembering to eat and remembering what I actually have in my cupboards!
So I have my fruit and snack bowls, all filled either prescription snacks, less than half a gram or completely protein free snacks, so I'm less likely to go for the snacks that are more interesting but heavier in protein (yoghurt, crisps etc)
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! 💙
(But look at these spots! The thing that actually should be routine, but almost never comes out like this. Now if only the results were as good as the spots... 🤪)