{"id":18492,"date":"2026-06-15T08:00:00","date_gmt":"2026-06-15T12:00:00","guid":{"rendered":"https:\/\/www.ptcbio.com\/?p=18492"},"modified":"2026-06-15T08:00:00","modified_gmt":"2026-06-15T12:00:00","slug":"international-pku-day-making-space-for-mental-health-conversations","status":"publish","type":"post","link":"https:\/\/panel.ptcbio.com\/es\/2026\/06\/15\/international-pku-day-making-space-for-mental-health-conversations\/","title":{"rendered":"International PKU Day: Making Space for Mental Health Conversations\u00a0"},"content":{"rendered":"\n

This International PKU Day, the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) is shining a light on as an aspect of PKU that is often left in the shadows: mental health<\/strong>. Through their\u202f\u201cTraces of PKU\u201d\u202fcampaign, they are creating space for honest conversations about the stress, stigma, isolation and emotional weight that can come with living with PKU. They aim to bring the \u201cinvisible struggles front and center.\u201d <\/p>\n\n\n\n

PTC is proud to join the campaign\u202fby elevating the voices of people in the PKU community and those who support them, and by making space for these important conversations.  <\/p>\n\n\n\n

In this article, you\u2019ll hear from three individuals living with PKU, each sharing how PKU intersects with mental well-being, and the importance of talking about the impacts of mental health.  <\/p>\n\n\n\n

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Kevin, Living with PKU, U.S. <\/h4>\n\n\n\n

\u201cWhen you\u2019re living with any chronic or rare disorder, it can get overwhelming at times. But we also have things going on in our lives besides just our rare disease. How do we separate what is going on in our lives from the daily experience of the rare disease lifestyle? We can\u2019t. And we need to start talking about how we deal with everything that is happening to us and how our rare disease is related to all of that. <\/p>\n\n\n\n

\u2026The more I speak with others in the community, I realize that I am not the only one thinking about all of this. Public discussions of mental health are still taboo. But many people reach out privately to chat about all of this. <\/p>\n\n\n\n

As a community, we must talk about PKU and mental health.<\/strong> People suffer in silence because they feel alone and misunderstood. <\/p>\n\n\n\n

When the burdens of life and living with PKU become too much, what can we do? I choose to focus on making incremental change – trying to improve one step at a time, one day at a time. The way I practice that in advocacy is by helping one person at a time. I try to lighten the load for someone else. When I do that, it makes the burdens a bit easier to carry.\u201d <\/p>\n\n\n\n

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Signe, Living with PKU, Denmark <\/h4>\n\n\n\n
\"A<\/figure>\n\n\n\n

\u201cLiving with PKU has definitely affected me mentally and psychologically. I\u2019m a classical PKUer, which means that it\u2019s the strictest diet I have to be on.  <\/p>\n\n\n\n

It\u2019s ongoing. It\u2019s always in my head. I probably think about [PKU] most of my waking hours. <\/p>\n\n\n\n

Throughout my entire upbringing I\u2019ve had to be on a really, really strict diet. And that control around food has given me a very abnormal view on food, and a disordered eating pattern.  <\/p>\n\n\n\n

My Phe levels got so high that I ended up deeply depressed; very, very anxious, very anorexic actually and at one point even psychotic. It has taken tremendous energy and tremendous effort to get my life together\u2026 to get my Phe levels down again. And I can happily say that they are within range now and I\u2019m doing much better mentally. But it is a daily struggle.  <\/p>\n\n\n\n

I think there needs to be so much more awareness of the psychological impact of living on a diet \u2013 the altered brain chemistry that PKU does lead to.\u201d<\/strong> <\/p>\n\n\n\n