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.
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. 😳
I’ve been encouraging people to subscribe to my blog a lot lately rather than counting on social media algorithms to see my content. I strongly felt like I had to “walk the talk” and improve the user experience.
So, I spent a good part of my vacation re-thinking the structure and working on it.
The past few days I’ve been taking creatine powder. From what I can see on YouTube, it’s used by gym enthusiasts to help them lift more weights and recover quickly.
As I’ve been feeling quite exhausted from walking a lot, I’ve been trying creatine, and I can tell you I’ve been feeling far less sore on the daily! But the weirdest thing is that I realised last night I was having half the dose as I need two teaspoons rather than one, but I’m still noticing the effects!
From the brief research I’ve seen, people with PKU have less creatine so it makes sense that the little dose has had such a profound effect.
I’ll also say consult with your dietitian, although I haven’t done so (but I plan to!). But if you have no health concerns and you feel your muscles aching for the slightest reason, maybe go get some creatine powder or tablets and give them a go!
En ce 29 février 2024, on célèbre la #Journéedesmaladiesrares. 😁
Comme j'ai une maladie rare appelée phénylcétonurie (PCU, PKU en anglais), je ne peux manger que 10g de protéines naturelles au maximum (moins, c'est encore mieux) car mon corps ne peut traiter un acide aminé spécifique, la phénylalanine.