Kevin Alexander: Part One

Introducing Kevin Alexander!

Kevin is an adult living with PKU in the US. He is also a professional videographer, and for the last few years has been producing videos about PKU on his website,

PKU Connect sponsored Kevin Alexander to visit Australia and speak at PKU events in October 2014. We were able to spend some time with Kevin and he answered our questions below.
What is your greatest achievement?

I don’t know if I can point to one specific event or achievement, but rather to the collective experience of the last few years. Until just a few years ago I was completely isolated from the PKU community. I was working in television news in the US, and in that career field you don’t have much time for anything else besides work. I wanted to use my professional skills for the PKU community, but didn’t have time to do it. A few years ago the timing was right for me to finally produce a PKU related video. I produced a short documentary called “My PKU Life” which went viral on YouTube in our little PKU community. Since then I’ve been able to produce other PKU videos on my website and travel the world to speak about my life with PKU. I’ve also had the opportunity to advocate for newborn screening as well. I didn’t think any of this was possible a few years ago, but the response to “My PKU Life” has been so positive and overwhelming that my life has completely changed.

Has having PKU ever held you back?

I don’t look at PKU as something that prevents me from doing what I want to do with my life. It’s just something I have to deal with every day. I can choose to not follow my treatment, or I can choose to be healthy. If I choose unhealthy actions, then yes, PKU can hold me back from accomplishing things. But so long as I’m following my treatment and making healthy choices then I don’t think I’m being held back. All of life is learning how to live within certain limitations. We are finite beings. There are always going to be things that we can or can’t do. That’s just the way life is. But what matters is our attitude concerning the situation we find ourselves in. I try to be as optimistic as possible, and continually ask myself what I am capable of doing, given my unique circumstances and life. Perhaps it’s just in the way you look at things. For me, I try to remain as positive as possible.

Kevin AlexanderWhat challenges do you face having PKU?

I am fortunate in that my PHE tolerance is higher than others. So I’m not quite as restricted in my food options as some. I can eat a basic vegetarian diet, and consume bread and pasta in moderation, especially now that I am a responder to Kuvan. But for me the greatest challenges are always social. No matter what your PHE tolerance is, a PKUer is always different from others. It’s still frustrating to know there are some restaurants I can’t  visit because there is literally nothing I can eat. But I’m fortunate because these days I have supportive friends who are open to going to other places where I can actually eat. But there are days when it’s really hard… I’m the only person in my city with PKU… At least, I don’t know of anyone else in my city. Having support on social media is great, but it would be really nice to be able to have dinner or hang out with someone else who has PKU.

What is your favourite food?

I’m not sure if I have one favorite food. I love salads. I love baked potatoes. I love apples with caramel dip. And on my recent trip to Australia I discovered that I love Turkish Delight. Absolutely love it. I think it’s easier to say what I don’t like. I don’t like olives and I don’t like mushrooms. Other than that, I’m quite open to trying new food.

How do your friends feel about PKU?

Ever since I started being vocal about PKU and newborn screening advocacy, I think my friends understand it better. It’s one thing to tell someone about PKU, it’s another to show them what it’s like to live with it. That’s what I try to do with all the PKU videos I produce… to show people what it’s like to live with PKU specifically, or a rare disease in general. And to remind people why newborn screening is so important. I’ve had many friends tell me they’ve paid more attention to newborn screening as a result of my advocacy, and that feels very nice. But my closest friends are very supportive. They don’t treat me as if I’m weird or different just because I have to eat differently than they do. I feel very fortunate to have such supportive friends today, because that hasn’t always been the case.

What are your tips for others with PKU?

Take it day by day, one step at a time. Try to make healthy choices each day. And if you have a bad day where you eat too much, or don’t eat enough, don’t get discouraged. Just wake up the next day determined to do better. Living the PKU lifestyle is a marathon, not a sprint. We will have to keep doing what we do every day for the rest of our lives, unless there is a cure in our lifetime. We can hope, and we can support others who are researching for a cure, but in the meantime we need to keep doing what we need to do – take care of ourselves and try to help take care of each other.

Read Part Two of Kevin’s story on his travels and passion for advocating PKU.

Check out all Kevin’s videos on his website