Get Ready to Imagine
A NEW WORLD
With PKU
At PTC Therapeutics, we support PKU caregivers. Together, let's reimagine a future of greater freedom for your loved one with PKU.
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Caring for Someone With PKU:
Unique Challenges, Stronger Community
Every caregiver worries about their loved one's well-being and future. Still, those caring for someone with PKU face unique challenges. Managing PKU's short- and long-term consequences can often feel daunting.
Addressing Social & Emotional Challenges
Teaching & Empowering
Teaching about the importance of the PKU diet and how to manage it independently fosters responsibility. Early responsibility often leads to better adult outcomes.
Meeting Special Dietary Needs
Managing Phe levels with a PKU-friendly diet is crucial, but substitutes and supplements can often be limited, bland, and expensive. Ensuring complete nutrition is also complex and time-consuming. Try diverse and creative recipes tailored for PKU diets to make meals enjoyable.
Keeping Phe Levels in Check
Elevated Phe levels can lead to depression, anxiety, hyperactivity, difficulty focusing, fatigue, headaches, and other issues. Monitor and manage Phe levels to prevent potential effects, improving overall well-being and mental health. Experts recommend keeping Phe levels at or below 360 μmol/L throughout life.
Special Challenges During
the Transition to Adulthood
The teen years and the transition to adulthood come with challenges. This period is marked by increasing independence, heightened social and emotional burdens, and the need to manage the transition to adult PKU care.
Transition Into Adulthood
Transitioning from pediatric to adult healthcare can be challenging. A seamless plan is crucial, including knowledgeable adult care providers and continued access to treatments and resources.
It is vital to maintain engagement in treatment during this transition. This involves regular check-ins with healthcare providers, consistent monitoring of Phe levels, and adherence to dietary and medical treatments.
Building a solid support network that includes family, friends, healthcare providers, and PKU communities can provide the necessary encouragement and resources to stay on track.
Increasing Independence
Teenagers often seek more control over their lives and diets, making strict low-Phe adherence difficult. Encourage them to participate in meal planning and preparation to feel more in control while meeting their dietary needs.
Encouraging teens to make informed choices about their health and diet is crucial. This involves educating them about the consequences of high Phe levels and empowering them to take responsibility for their health.
Adolescents often feel pressure to fit in, making it hard to stick to a PKU diet. Fear of isolation can lead to non-compliance. Help teens navigate social situations with PKU-friendly snacks and strategies for explaining their dietary needs to friends.
The emotional toll of managing PKU can be significant during the teen years. Anxiety, depression, and mood swings are common and need to be addressed with appropriate psychological support.
Imagining a New Future
At PTC Therapeutics, we’re reimagining a future where people with PKU can live more freely—by listening, learning, and sharing real stories from the community. Watch Pam and Kelsey’s story to learn about daily life with PKU and how their shared care inspires strength and connection.
Want to hear how Emma is reimagining PKU and sharing advice for others living with it? Visit the patient site
Stay in the Loop as We Reimagine the Future of PKU—Together.
At PTC Therapeutics, we understand the unique challenges of caring for someone with PKU, especially given the limited advancements in treatment over the past six years. We are committed to helping reimagine a new future.
Updates from Reimagine PKU
Get the latest tips, news, events, and insights from the PKU community, all in one place.
Tips for Caregivers
Caregivers, we need your input!
We value your experiences and insights. Please take a few minutes to complete our survey, which will help us better understand the challenges and successes of managing PKU.
Resources for PKU Caregivers
Caring for someone with PKU can be challenging, but no one should do it alone. Here are some organizations and resources to help you on your journey.
National PKU Alliance
Find resources for individuals with PKU and their families. Explore comprehensive guides and support programs designed to assist with the unique challenges of PKU.
flok
flok supports those living with PKU and their caregivers by providing an app for daily PKU management, educational resources, community connections, and the opportunity to drive research through daily care. Care and Research, Together. That's flok.
National Organization for Rare Disorders (NORD)
NORD offers the latest information about PKU research and care, as well as financial assistance for patients and resources to connect with the rare disease community.
Global Genes
Global Genes provides information, resources, and connections to communities affected by rare diseases.
Rare Revolution Magazine
Rare Revolution Magazine highlights rare conditions, like PKU, by sharing powerful stories, expert insights, and advocacy from the rare disease community.
