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. PKU experts recommend lowering and maintaining blood Phe levels to within a range of 120‑360 μmol/L (2‑6 mg/dL) 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 Independance
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.
Reimagining the Future of PKU Care
PTC Therapeutics acknowledges the need for more treatment options and values its relationships with those impacted by PKU and advocacy groups. We want to inspire hope for a future with more possibilities for those with PKU and their caregivers.
Permission to Dream
Empower individuals with PKU and their caregivers to envision a life with more possibilities and freedom. The PKU community inspires us to dream big and push for the advancements you deserve.
Catalyzing Hope
Renewing hope within the PKU community. Although significant advancements in the management of PKU have not occurred over the past six years, PTC Therapeutics is committed to helping reimagine a new future.
Tips for Caregivers
PTC Reimagines PKU
At PTC Therapeutics, we understand the unique challenges of caring for someone with PKU, especially given the lack of significant advancements in treatment over the past six years. PTC Therapeutics is committed to helping reimagine a new future.
We Want to Hear From You
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Stay ConnectedCaregivers, 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 their 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.
