Kevin Alexander is a normal guy. He likes to play electric guitar, video games, and write music. He enjoys listening to movie sound tracks, playing in a band and is a professional Videographer. What most people would not realize about Kevin is he is living with Phenylketonuria (PKU) – a rare inherited disorder resulting from Phenylalanine hydroxylase (PAH) deficiency. If not treated within the first few weeks of life, serious neurological problems will occur.
Kevin, the Founder of Creative Control Films is passionate about his work. Not only has he produced over 10,000 videos (including documentary shorts, TV spots, corporate videos and others) and traveled the world, Kevin was recently elected as Chair of the Board of the Metabolic Disease Foundation. The goal of the international organization is to provide social support and material to PKU sufferers and others with metabolic diseases. The Global Genes Project (GGP) team had the opportunity to speak with Kevin about his life with PKU.
GGP: What do you enjoy most about your work?
“I love telling stories and believe I have an obligation to the PKU community to share my and others’ experiences about living life with PKU.
As a filmmaker, Kevin is a unique individual whose ultimate dream is to produce entertainment with purpose. His short documentary “My PKU Life” has been viewed over 3,800 times in 55 countries. The response has been so overwhelmingly positive that Kevin plans to produce a feature-length documentary on PKU.[youtube https://www.youtube.com/watch?v=W2ipJAIiBc8]
GGP: What is most challenging about PKU?
“My biggest challenge is social situations. People treat me differently because I eat differently. My friends understand PKU is very difficult, but-non PKU people think I am VERY different. I’ve had to adjust to other’s perceptions and learn to cope with what other people expect is the norm.”
Although Kevin has a higher tolerance for protein than most PKU sufferers and can get away with the occasional small dose of pasta and cream in his Starbucks coffee, those who do not understand PKU find Kevin to be weird. Over the last few years, Kevin has focused on educating others about PKU and in return has gained more acceptance from others.
“Up until recently, I wouldn’t have talked about PKU, and people would look at me as weird and different. The more that I have been able to communicate about PKU and accept help from others, I have come to the realization that I don’t care. I’m going to be me. Attitude is everything.”
GGP: If you could share one message to others about Rare Disease, what would that be?
“Just because I eat something different, doesn’t mean I am strange. So long as I have access to my medicines, I am normal like everyone else.”
GGP: What was it like to have PKU as a child?
Kevin admitted to having some insecurities. “I struggled with friends and would feel weird or different because of my eating habits. I also grew up taking my disease for granted. To me it was normal – it’s just my life.” Kevin continued, “I had good friends that knew what I could and could not eat and did not care. Some others would make a big deal about the food thing – and made me feel like an outcast.
GGP: What would you tell parents of those children suffering from PKU?
“When you are a child, you are stuck with the people you may or may not want to be friends with. It’s important to meet others with PKU.” Kevin further discussed his building his confidence through social media like Facebook and through his video production where he was able to meet others diagnosed with PKU. He also discussed the importance of staying on a diet and formula. “I attribute my educational success to being healthy. There are challenges with being on a proper diet and formula, but it is the recipe for success.”
GGP: How do you want to make a difference for others suffering from PKU?
“From a communication perspective there are two audiences. You have the PKU audience and the ones that don’t know about PKU at all. I made the video to get the message out to the world at large that Phenylketonuria exists and because of lack of funding issues we need help.” Kevin would like to continue to raise awareness about PKU as well as raise funds for research and better access to medical formulas. Kevin states: “We need more research. For most people, whatever is your normal you take for granted. For individuals with PKU, our formula is the most basic thing. We have to have it to survive.
GGP: What is your normal?
You can visit Kevin on his Facebook page on: https://www.facebook.com/kevpku
Learn more about Phenylalanine Hydroxylase Deficiency and PKU here: https://www.ncbi.nlm.nih.gov/books/NBK1504