PKU and Me: Chloe’s Diagnosis Journey

PKU and Me: Chloe’s Diagnosis Journey

Hi! My name is Chloe, I’m 31 years old and I’m Galen Medical Nutrition’s new PKU blogger.

I live in Dorset with my boyfriend Tommy where I work as a receptionist at a leisure centre and I have a golden retriever called Bertie. When I’m not at work I enjoy going away, my favourite place to visit is Malta. I also like to spend time with my friends at the beach in the summer. My favourite PKU friendly place to eat is Pizza Express as I know I can have the full pizza without having to worry about weighing it! I am currently taking 2 caps of PKU EASY Microtabs twice a day and am on 8 exchanges.

I was diagnosed with PKU at 8 days old and put onto the PKU diet straight away, my older brother Luke also had a PKU diagnosis, so my parents had wisely kept 2 tubs of lofenalac just in case! I almost didn’t begin the most typical PKU journey when I was 1 month old the health visitor called my mum to tell her the really good news that I didn’t actually have PKU because my levels had come back as normal. Mum had to point out to her my levels had come down because I was now following the diet, thankfully Mum and Dad had done their research. I didn’t see a PKU specialist until I was 8 years old as we were unaware that we were meant to until we went to a NSPKU conference, and the other parents were talking about appointments and annual bloods. Up until that point I had only seen a local paediatrician and dietitian that only had outdated information about PKU. I had my first set of annual bloods around my 8th birthday, I was even lucky enough to get a birthday present from the nurses!

I have found navigating life with PKU has its challenges at times especially as I got older and took control of doing my diet. For years I struggled with taking my supplements, more than a few were feed to the lilies in the front garden! As I have got older, I have finally seen the benefits of taking the supplements! I found out about Microtabs at a NSPKU conference and requested a sample, it took a bit of practice but now I find them the quickest and most convenient supplement to take.

By attending conferences, using social media and sharing experiences with other people with PKU and their families I have found a very supportive and understanding community which I personally have found very helpful. I am looking forward to sharing my experience with PKU through the Galen Medical Nutrition blog and I hope you enjoyed reading this and looking forward to the next one.

 

*Please note products should be used under strict medical supervision

 

Galen’s Learning Lab Winners for 2024 announced

Galen’s Learning Lab Winners for 2024 announced

This year, Galen Medical Nutrition launched a new educational support program called Galen’s Learning Lab to help individuals in the metabolic community with inherited metabolic disorders such as Phenylketonuria (PKU) and Tyrosinemia (TYR).

Galen’s Learning Lab educational support program extended to a wider age range, from 5 years old to adults able to apply through a Storytelling Challenge. There were four different categories depending on age range, which allowed the story-telling challenge to be tailored to suit the ability of each age group. This allowed the entrants to explore their creative imagination and write a story or draw a picture as their submission.

The Galen’s Learning Lab 2024 winners have been announced as,

Category 1- Adventures Winner

5-8 years old – Jenny O’Hagan

Category 2- Tales Winner

9-12 years old – Rose O’Hagan

Category 3- Chronicles Winner

13-16 years old – Lewis Murdoch

Category 4- Journeys Winner

16 years and older- Isla Trotter

Congratulations to the 2024 Galen’s Learning Lab winners!

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