Ben – Georgia


I was diagnosed with Homocystinuria at birth. Thankfully, my family relocated from Kentucky to Georgia in 1987, three years before I was born. This was a tremendous blessing because Kentucky did not screen for HCU in 1990. Because I was diagnosed at birth, I have been able to avoid many of the dangerous side effects of HCU.

Growing up, I had a much more difficult time handling my disorder than I do now. I don’t mean that I had difficulty in following my low protein diet or in taking my metabolic formula because the importance of both of those was instilled in me by my parents. My difficulty came mostly in social settings. I was embarrassed at birthday parties because while everyone else was enjoying birthday cake, I was eating an individually wrapped snack cake. At cookouts or sleepovers, I felt like I stood out because I had to cut my hot dogs in half because of their protein content. I felt like my disorder made me different, so I didn’t like it.

However, as I grew older, I began to care less and less that I ate differently than my friends, and I even became comfortable in discussing my diagnosis with them. Now, it is easier than ever for me to follow my low protein diet since more and more people are turning to vegetarian and vegan lifestyles. This has led to restaurants and grocery stores having more low protein options than ever before.

Today, I am enjoying my 6th year of teaching ELA to 7th graders and my 4th year of coaching middle school basketball and soccer. I have been happily married for three years to a wonderful woman who keeps me in line when it comes to handling my Homocystinuria. Seriously, she is great; the low protein recipes Lindsey comes up with are phenomenal. We enjoy visiting family and friends, watching movies, and hiking together. I am truly blessed to have the love and support of a caring group of people.

I realize that since my disorder was diagnosed at birth, my journey with HCU has been easier than those faced by many other patients. However, if you, your child, or someone you love is dealing with HCU, I can still offer some encouragement. It is going to be ok. It may seem overwhelming at times: the diagnosis, the dietary restrictions, the complete change of lifestyle, but with dedication and perseverance, it is manageable. Seek out others who deal with this disorder, ask questions, do research, use the resources that are available to you. Be an advocate for yourself and others dealing with HCU.

Finally, don’t be defined by a metabolic disorder. That will seem like a silly statement to someone who hasn’t had to deal with one before. Maybe you will have to change how you eat, or you will have to take some medications that you didn’t have to take before, but that is ok. The good news is, you are still able to live a “normal” lifestyle, just with a few modifications.

HCU friends, lettuce turnip the BEET!