My PKU Life

Summary

Kevin Alexander, a 31-year-old with PKU, shares his life journey living with a rare genetic disorder that restricts protein intake. Despite the challenges, he has thrived in professional video production, documenting significant events and traveling the world with his wife. Kevin emphasizes the importance of early diagnosis and treatment, highlighting how access to medical foods has enabled him to lead a fulfilling life. Now a father, he advocates for awareness and support for PKU families, stressing the critical need for access to medical resources to prevent devastating consequences and ensure a productive life for those affected.

Takeaways

• 😀 Kevin Alexander is a 31-year-old living with PKU, a rare genetic disorder affecting protein metabolism.
• 🥗 Living with PKU requires a strict low-protein diet, which means avoiding common foods like meat, dairy, and certain legumes.
• 🎥 Kevin has built a successful career in professional video production, documenting significant events and traveling extensively.
• 🌍 His experiences include covering Hurricane Katrina and participating in a church mission trip to Siberia.
• 👨‍👩‍👦 Kevin's personal journey includes being a father to two sons, one of whom, Will, was diagnosed with PKU shortly after birth.
• 📚 Education plays a crucial role in Kevin's life; he holds a bachelor's degree in Mass Communication and a Master of Arts in Theological Studies.
• 🧠 Kevin emphasizes the importance of mental engagement through reading and deep thinking, which he values highly.
• ⚖️ The consequences of not adhering to PKU dietary requirements can be severe, including mental impairment and institutionalization.
• 📢 Kevin is advocating for increased awareness and support for the PKU community, emphasizing that 20,000 individuals in America need access to medical resources.
• 💡 He urges everyone, regardless of their familiarity with PKU, to educate themselves on the issue and support those affected.

Q & A

What is PKU, and how does it affect Kevin's daily life?

PKU, or Phenylketonuria, is a rare genetic disorder where the body cannot properly break down protein. For Kevin, this means adhering to a very low-protein diet, which excludes meat, dairy, and other high-protein foods.

How has Kevin's life and career been influenced by his diagnosis of PKU?

Kevin credits his diagnosis and treatment for allowing him to lead a productive and fulfilling life. He has worked in professional video production for ten years, documenting various events and traveling worldwide.

What experiences does Kevin share about his travels?

Kevin has traveled to many locations, including Russia, Ireland, Yellowstone National Park, and the Cayman Islands, where he documented his adventures while pursuing his passion for videography.

What key factors does Kevin believe have contributed to his successful management of PKU?

Kevin believes that being diagnosed early, following a strict low-protein diet, and having access to medical formula have been critical in managing his PKU and living a normal life.

How does Kevin feel about his life compared to what it could have been without proper treatment?

Kevin expresses gratitude for his life and acknowledges that without early diagnosis and treatment, he could have faced severe cognitive impairments or institutionalization.

What recent experience prompted Kevin to become more involved in the PKU community?

Kevin's desire to connect with other PKU families, particularly after his own son was diagnosed with PKU, has motivated him to engage more actively and share his knowledge.

What aspirations does Kevin's son, Will, have for the future?

Will, Kevin's six-year-old son, aspires to become a researcher, specifically in the field of PKU, highlighting the potential for PKU patients to contribute positively to society.

Why does Kevin emphasize the importance of adherence to PKU dietary guidelines?

Kevin stresses that adhering to the strict metabolic diet and using medical foods is essential for preventing serious health consequences, such as seizures or institutionalization.

What message does Kevin want to convey to the public regarding PKU?

Kevin urges the public to become educated about PKU and the importance of access to medical foods and formulas, emphasizing that it affects the quality of life for those living with the condition.

How can individuals learn more about PKU and support the community?

Individuals can visit the National PKU Alliance's website at www.npkua.org for more information on PKU and ways to support those affected by the disorder.