PKU awareness Uk & Ireland with PKblUe

28/08/2026

How to make your GMpro substitute more interesting! Turn it into a smoothie! This one is raspberries. Blackberries and strawberry with added GMpro vanilla and cloudy lemonade (make sure the lemonade doesn’t contain aspartame!)

08/08/2026

Ginger bread bites made using Promin all purpose mix…. 🙂

21/06/2026

Exhaustion. Depression. Anemia. Sleep problems.

For a long time, Gavin searched for answers. Because he lives with PKU, many people assumed these symptoms were related to his condition. However, his phenylalanine (Phe) levels were well controlled.

When the symptoms continued, Gavin pushed for further testing. The cause turned out to be a pituitary adenoma.

But what is a pituitary adenoma?

The pituitary gland is a very small gland located at the base of the brain. Even though it is tiny, it helps control many important functions in the body, including energy levels, sleep, mood, growth, and hormone production.

A pituitary adenoma is a growth in this gland. It is usually not cancerous, but it can affect how the gland works and cause a wide range of symptoms.

For Gavin, these included exhaustion, depression, anemia, and sleep problems.

Other people may experience headaches, vision problems (such as blurred vision or loss of side vision), dizziness, muscle weakness, unexplained changes in weight, changes in mood or anxiety, changes in sexual health or fertility, excessive sweating, or changes in how their body grows and develops.

Not everyone experiences the same symptoms, and many of these symptoms can also be caused by other health conditions.

Gavin's story reminds us of something important: not every symptom experienced by a person with PKU is caused by PKU.

If something doesn't feel right, and symptoms continue despite good metabolic control, it is important to speak with your healthcare team and keep looking for answers.

Have you heard of a pituitary adenoma before reading Gavin's story?

18/06/2026

12/06/2026

New fantastic taste. More refreshing than ever… enjoy with ice. :)

08/06/2026

Aspartame free and great flavour!

03/06/2026

Save the Date – International PKU Day 2026

Join NSPKU online on Sunday 28 June at 10.30am for a special International PKU Day event.

Hosted by Tom Chimiak, we'll be hearing about PKU Day activities taking place across the UK, before Professor Anita MacDonald shares the latest developments in PKU research and the exciting new treatments on the horizon.

💙 Free for NSPKU members – registration details coming soon.

We're also launching the NSPKU Research Fund, supporting future research projects that could improve the lives of people living with PKU. To mark the occasion, we're asking our community to donate or fundraise through our JustGiving campaign.

👉 Save the date and watch out for registration details.

👉 Support the NSPKU Research Fund here: https://www.justgiving.com/campaign/pku2026research

Together, we can celebrate our community and help fund the next generation of PKU research.

29/05/2026

🎙️ A new conversation is coming to Metabolically Speaking, and this one goes beyond the clinical perspective to explore the true lived experience of a rare condition.

This month, we’re honored to welcome Kevin Alexander to the mic. As a PKU advocate, storyteller, and founder of PKUJournal, Kevin shares lived experiences of PKU and explores themes of identity, connection, and what it means to live well with a rare metabolic condition.

Now we want to hear from you. 🎤

What would you like to ask Kevin about his journey, storytelling, or navigating life with PKU?

Drop your questions in the comments or send us a DM 📥

🎧 Listen on Spotify, Apple Podcasts, Amazon Music, and YouTube. Subscribe to Metabolically Speaking so you never miss an episode.