ShareYourStory
You are more than your PKU!
Maddison shares 'One piece of advice I’ve always had is don’t let PKU define YOU as a person. You are more than your PKU!'
ShareYourStory
Real, authentic stories from people living with conditions every day.
ShareYourStory
Share Your Story
I believe that every story matters. If you’d like to share your experience — whether funny, heartfelt, or practical — on my blog, please get in touch
ShareYourStory
When the Parent Has PKU
The day my baby was born, as well as all the emotions that I felt on finally getting to meet my baby girl, I was so relieved that I had done it. All that hard work I put into my diet for over 2 years had been worth it, she was perfect!
ShareYourStory
PKU, Protein, and Pressure
I’ve never struggled too much with my diet... What has affected me is the mental state the diet puts me in. The constant weighing and measure of every option before me. The anxiety of it.
ShareYourStory
Share Your Story
Every story adds to our shared understanding of PKU. The post can be anonymous, we don’t have to share your name. Join our community and share your story today
ShareYourStory
Lived Experiences of Genomic Testing
Genomic testing isn’t just about science—it’s about people. This blog explores the emotional rollercoaster of the UK Sapropterin rollout and why patient voices matter.
ShareYourStory
Gyms and PKU
Like with everything, going to the gym should be fun and rewarding... it just takes a bit of time and care - like anything with PKU!
ShareYourStory
Moving with PKU: Get moving!
In his first blog for PigPen.Page, Soheb discussed the benefits and potential pitfalls facing a PKU-er moving out of home for the first time. Part two looks at practicalities of moving and how to prepare.
ShareYourStory
Moving with PKU: Get ready
Moving out can be pretty intimidating in itself, but when you have PKU, it can feel incredibly intimidating...If you are considering moving out into a new place, there are a few things you will need to think about carefully.
ShareYourStory
A day in the life of PKU
A dietician’s focus on PKU may be a purely objective one... They only see us once every few months so how do you show them the daily perspective? How do you explain living with PKU to someone who approaches it from a medical or academic perspective?