My name is Kevin Alexander, and I live in Shreveport, LA. I am an adult living with PKU and since 2012 I’ve been an advocate for PKU, newborn screening, and rare disease awareness. I’m also a professional videographer, and in that time I have produced numerous videos raising awareness for our cause.
When I was growing up I didn’t know anyone else with PKU or similar metabolic disorders. But over the years I’ve been fortunate to meet people from around the world in our community, and it has greatly encouraged me as I grow through life managing my PKU. I became involved with LMDC because I believe that in addition to fostering online relationships with people affected by metabolic disorders it is equally important to develop such relationships in our local communities and across the state.
Living with any metabolic disorder can be an isolating experience. It is not something that the average person understands. Therefore, it is critical for us to get to know one another and encourage each other as we navigate the various challenges that arise from our respective conditions.
I believe that the most important work that we can do is providing people affected by metabolic disorders across our state the opportunity to meet one another and the information they need to successfully manage their condition or their child’s condition. Whether that’s through social media, in-person events, or reaching out to new parents who are just being introduced to the world of metabolic disorders… There are numerous methods but one goal… to connect with each other in meaningful ways.
Living with a metabolic disorder can be incredibly stressful but a am able to cope through music. I’m a musician. I’ve played guitar for over 20 years and spent quite few years playing in a band at church. I spent a few years away from the instrument, but in the last few years I have picked it back up again. There is nothing else that helps me alleviate my stress quite like playing guitar. There are a few other activities that help me de-stress, like working out, yoga, and keeping a vegetable garden.
Many rare conditions are invisible. You could never tell just by looking at someone that they have a medical condition that requires extreme diligence. Unlike “dieting”, someone with a metabolic disorder cannot take a day off from following their strict medical diet. In some cases ignoring the diet could lead to neurological problems… in other cases, death. It is quite serious. I recognize that most people will never be personally affected by a metabolic disorder. But everyone is affected by newborn screening since virtually every child in America is screened at birth for a variety of rare disorders. So, typically, when I talk to people, I try to emphasize the importance of newborn screening. It has been called the greatest public health success story of the 20th century, but many people are completely unaware that it exists. Despite raising awareness of our own conditions or metabolic disorders in general, we have a passion for letting people know about newborn screening because we recognize the role it played in our lives. I say it often, and it is no cliche: Newborn screening saved my life.