New series on #Sapropterin (#Kuvan)

I have spent months doing baseline testing and trialling Sapropterin. Like many others, it has proven a hard road, but I feel ready to share my experience in a series of 3 blogs.

Here is the first one for your weekend reading:

Sapropterin trial, part 1: genetics & patience.

to https://pigpen.page/

#LivingWithPKU #PKU

A year after the genetics testing I was able to start trialling #Sapropterin (#Kuvan)

I had a poignant moment when I realised I was about to try my first treatment beyond restricted-diet therapy in over 40 years of #LivingWithPKU

#PKU #AdultPKU

https://pigpen.page/sapropterin-trial-part-3-the-trial/

Update on the #Sapropterin (#Kuvan)Blog series:

Sapropterin trial, part 2: Baseline testing discusses the requirements of the baseline control testing before starting the medication, and looks at the interesting lessons learned.

https://pigpen.page/sapropterin-trial-part-2-baseline-testing/

#LivingWithPKU #PKU #AdultPKU

Update on the #Sapropterin (#Kuvan)Blog series:

Sapropterin trial, part 2: Baseline testing discusses the requirements of the baseline control testing before starting the medication, and looks at the interesting lessons learned.

https://pigpen.page/sapropterin-trial-part-2-baseline-testing/

#LivingWithPKU #PKU #AdultPKU

#Sapropterin blog series - with correct link!

Sapropterin trial, part 1: genetics & patience.

https://pigpen.page/sapropterin-trial-part-1/

#LivingWithPKU #AdultPKU #PKU #Kuvan #pkuawareness #PKUFitness #pkulife #pkuproblems #pkustrong

New series on #Sapropterin (#Kuvan)

I have spent months doing baseline testing and trialling Sapropterin. Like many others, it has proven a hard road, but I feel ready to share my experience in a series of 3 blogs.

Here is the first one for your weekend reading:

Sapropterin trial, part 1: genetics & patience.

to http://PigPen.page

#LivingWithPKU #PKU

RT @BenRAtkinson
The boy just ate 9ex of veggie sweet and sour noodles - couldn't get it into him quick enough! Now running around with a bottle of cow's milk as happy as can be... so grateful for #kuvan and the fact he's a responder. #PKU @NSPKU 🙏 🍜