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 Up until that point I had only seen a local paediatrician and dietitian that only had outdated information about PKU.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

 

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