@soheb contact #NSPKU first!! They have experts that can help answer all and any questions. Do NOT Google PKU. #PKU doesn't mean a limited and boring life! With proper diet control, they can live their fullest life like anyone else.
I am Clair, 29 (nearly the big 3-0!) I have classical PKU.
My hobbies include reading, posting pictures of my black cat, Cosmic and playing xbox for too long ignoring all my basic bodily needs.
I attempt to cook and bake #PKU friendly foods and I share any recipes I do perfect on my Instagram page. Ginger_PKU_Goddess.
Feel free to also add me there!
Open to all and any discussions regarding PKU, I hope to pass on the lessons I've learnt to others.
Quite interesting a lot of the pros are trying to avoid social situations where one would make things awkward or inconvenient by explaining PKU rather than just rolling with it.
Also, I'm so with her on the selfishly making tea things!
It's honestly baffling how much having low phenylalanine has changed my life!
I used to have so much anxiety, be really indecisive about things, get incredibly frustrated when things didn't go the way I wanted to (and lets face it, when does life ever go exactly the way you want it?). And honestly, I was quite miserable to be around.
I got very serious about sorting out my knowledge about exchanges in my thirties, and it has made such a difference!!
50 years ago, the National Society for PKU was set up to help patients and their families with an incredibly restrictive Inherited Metabolic condition.
They have supported countless people over the years.
I’m supporting them this summer by donating 50% of all profits from #LivingWithPKU book sold in to the NSPKU‘s #GoldenAnniversary campaign
If you’re even remotely interested in #PKU, please pick up this valuable resource & support an amazing charity and everything that they do. Thank you
Going to be seeing some old friends, and also planning on having some phe exchanges outside.
What are folks tips and tricks for managing phe for foods that you don’t know (e.g. restaurant food)? Mine is skipping either lunch exchanges or both lunch and dinner exchanges to ensure I stay in the green…
My last bloodspot result came in, and it was 394umol/L!!
I’m so happy and proud of myself for managing to keep my levels down for a whole entire YEAR!! Past me wouldn’t believe such a thing, and yet here I am!! 😁🎉🥳🎊