Phénylcétonurie PCU Association Les Feux Follets

18/06/2026

18/06/2026

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

🗣️ Aging and PKU: A Topic Chosen by Our Community

As we developed the programme for , we looked closely at the conversations taking place across our social media channels to understand which topics matter most to our community.

Earlier this year, our call for research on Growing old with PKU generated remarkable interest, strong reactions, and extensive discussion among people living with PKU, families, and advocates. 💬

The response was impossible to ignore.

📣 That is why Aging and PKU has been included in this year's conference programme. The topic earned its place on the agenda because it resonated so strongly with our community and sparked one of the most engaging conversations across our social media channels.

❤️ Thank you to everyone who contributed to the discussion and helped bring this important subject into the spotlight. Your engagement helps shape not only the conversation, but also the priorities of our conference.

🎉 We look forward to continuing this discussion together at the 40th E.S.PKU Conference.

18/06/2026

International PKU Day28th of June is International PKU Day Like many rare diseases, it is a characteristic of Phenylketonuria that the general public is not sufficiently informed on the disorder and the needs of patients. At the ESPKU Delegates Meeting 2013 in Antwerp, it was decided to initiate the...