In my role as a PKU storyteller and advocate, I have to look at things from many perspectives. However, as a PKU adult, today I’m sharing my perspective gained from the 2023 ESPKU Conference.
This episode is sponsored by Ajinomoto Cambrooke and was produced at the 2023 European Society for PKU and Allied Disorders Treated as Phenylketonuria (ESPKU) Conference in Birmingham, UK. Cambrooke’s founders, Lynn and David Paolella, have been friends since the beginning of my PKU advocacy journey and I told part of that story in a previous sponsored article. I don’t typically seek sponsorships in my work. It has to be a product or service that I believe in and use myself. But I have been using Cambrooke formulas (I prefer to call them medical drinks, but I recognize that many still use the term “formula” so I’ll use it in this post) since 2012 and am honored to partner with them to bring you content from the 2023 ESPKU Conference.
In This Together – A PKU Adult Perspective
In the last episode of my podcast, I shared my experiences from the 2023 ESPKU conference. That’s the European Society for PKU and Allied Disorders Treated as Phenylketonuria. I produced that episode from the United Kingdom and, including me, it featured the voices of 27 people living with PKU… Adults, parents, spouses…
Remember, this life affects everyone surrounding the person who has it.
I use the term “living with PKU” inclusively because PKU might affect us differently, but we are one community, here to love, serve, and care for one another.
I gathered so much material that I’m now working on a second episode. But, I’m taking my time with it. I interviewed a few people who shared some special stories and perspectives with me, and I realized those stories would never make it into the previous episode. So, the next episode of my podcast will feature just a few people, and we’ll spend a bit more time with each of them.
But today, I’m still thinking about the ESPKU conference. This episode will be more like the episodes I normally produce—brief thoughts and reflections on life from a PKU or rare disease perspective.
While at ESPKU, I spoke on a panel with other PKU adults.
And among the topics we discussed, mental health and the importance of community were at the top of our minds. So today, I’m reflecting on some of the ideas we spoke about and others I encountered during my trip.
Our community is full of people from all walks of life and from varying perspectives.
And all of our non-profits were created by concerned parents and grandparents who moved mountains for their children. We wouldn’t be where we are without them.
But collectively, we adults living with PKU are part of the first generation of those living with this rare disease who have received treatment for life. And many of us are involved in advocacy and taking leadership roles in these organizations around the world.
Because remember… The PKU community is one global community. We exist to support each other. And I feel like this is worth emphasizing. Because it’s so tempting for all of us to get so focused on our own perspectives about life with this rare disease that we can’t even consider someone else’s point of view.
As I’m writing this I’m thinking about an experience I had earlier today. I saw someone pose a question to those in the PKU community that began with the phrase, “No judgment please.” And my heart broke for that person as I realized they felt the need to say that.
The one thing no one should ever receive in the PKU community, or in the wider rare disease community, is judgment.
We all struggle at times, whether or not we’re someone who has PKU or we’re a caretaker for those who do. We are all part of the same community.
And even though we might approach this life from different perspectives, and might even disagree from time to time, we are all part of the same global PKU community, and we come together to support each other.
Because all of us need that support. We certainly don’t need judgment.
Living with compassion.
Showing mercy.
That is how we build community.
And as we grow our community I think there are some things we need to consider. Ideas that I thought and wrote about after the ESPKU conference, and hearing so many perspectives from around the world. Ideas that reflect the diversity of experiences across the PKU community.
A PKU Adult Perspective
I think it’s extremely important to remember that PKU doesn’t just affect children. Our community is fortunate in that we can grow up into healthy adults because of treatments available to us.
And, as care evolves for adults with PKU, I think there are a few things we need to keep in mind.
We need to support adults at every stage of the life cycle… Those just entering adulthood and either transitioning into college or the workforce. Those established in their lives and careers but always trying to figure out how to live a balanced life with PKU and navigate the myriad of social issues and challenges we face daily. And those who are aging, and are becoming the first generation of older adults with PKU who have been on treatment for most of their lives.
But also, we need to start talking about how living with PKU affects not just the adult who has it, but others in their lives—family members, close friends, partners. For a long time, we have spoken about PKU from just a few perspectives. There’s the child who has it, the parent taking care of that child, and the child as they become an adult.
But human life is complex, and how we speak about those affected by PKU needs to reflect that complexity.
How does it have an impact on the rest of the family? The grandparents… siblings… close, trusted friends. And especially, our partners. Those whom we let into our lives and who become our confidants carry our burdens, as we also carry theirs. And this rare disease life affects them, too. They were once completely unconnected to our community, but then they became inducted into this life and it became central to their experience as well. And we need to listen to them more and learn how we can support them.
And how about those adults with PKU who are parents themselves? How does PKU affect their entire family, including their children?
I’m not criticizing any of the language or ideas that got us to where we are now. We would not be here without the determination of our parents, grandparents, and medical professionals who paved the way for us.
Naturally, the drive for advancements in PKU research and development began with the previous generation. But as time has progressed, we now have more PKU adults whose lives have been changed because of those advancements in care.
We are discovering our voices in advocacy. And we are sharing our stories.
The stories of those whose lives have been changed because of newborn screening and modern treatments.
We are discovering our voices in advocacy. And we are sharing our stories. The stories of those whose lives have been changed because of newborn screening and modern treatments.
I’m thankful that our organizations are recognizing the value of the PKU adults’ collective voice. And that they are listening to us.
Because our voice is powerful. It’s the voice of a changed generation.
But, across the world, as this generation becomes more and more involved, takes leadership roles, and dares to change the world… Let’s not forget those who paved the way, and all of those surrounding us who are affected by this rare disease life as well. And continue to respect the diversity in our community. Because…
Every voice matters.
Every story matters.
Every person matters.
And we are all in this together.
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