Adam's LCHAD Homepage

One day when I was about 6 months old my parents discovered I was unresponsive and so weak I could not hold up my own head. I was rushed to the hospital and diagnosed with LCHAD. I believe that as a kid growing up as a kid with LCHAD was much harder on my parents than it was for me. I did my best to be a normal kid doing everything that I really wanted to do just like other non-LCHAD kids. I loved to play games at recess, swam on a local swim team, acted in musicals, and my reading level and standardized testing scores were always high. I was able to travel to different locations all around the world for up to a month at a time, some for leisure and some for medical studies for my eyes, heart, and metabolism. My success had much to do with my wonderful and extremely caring parents who always kept a close eye on my diet and activity level until I reached the age where I could do this myself (they still worry about me a little too much if you ask me.) As a child I did not really understand much about LCHAD and so I did not let it slow me down but, often that meant one or two annual trips to the hospital.

While my frequent hospitalizations were not pleasant, they were reminders that I was not an average kid. My parents always made sure my teachers knew about my condition. After answering my peers repetitive inquiries about, “what is that stuff you are drinking at lunch?” and “why do you carry a gatorade around at recess.” it became a normal routine for me to explain that I had LCHAD. The main difference living with LCHAD was a lack of coordination. As such, I did not achieve the success at sports that my older brothers did. I often preferred to sit home and watch TV and as a result I was pretty overweight. However, during puberty I lost much of the weight and with carful diet and exercise I maintain a healthy weight. Once I matured into my teens I started to understand much more about LCHAD and how it affected me I managed to stay out of the hospital for over a decade with self treatment of sugars and carbohydrates.

Now that I am older I lead a very normal life. I had a very enjoyable high school experience at Bellarmine College Prep and West Valley Community College in San Jose. The greatest challenge of my adult life was going off to college. I chose a school that was close to home so that I could feel free, but safe in case I needed support. I attended the Baskin School of engineering at the University of California, Santa Cruz. It was the first time I had lived out of the house and to make matters more difficult, Santa Cruz built in a forest on a steep hill) is a challenging school to navigate on foot for someone with LCHAD. Studying late meant meals were often difficult to plan out. I also came down with a stomach issue unrelated to LCHAD and the combination of poor diet and this stomach issue I had to be hospitalized after over 10 years. I continued to visit the hospital a few times over the next three years and affected me to the point that I had to drop my computer engineering minor in order to graduate on time. But, in 2015 I graduated from UCSC with a degree in Bioengineering.

I now work as a test driver on the Google self-driving car project. I plan on going back to school for a masters degree when my contract is up in a few years. As I get older I find my main problem is an increased rate of muscle atrophy. I have maintain a regiment of exercise so I can keep pace with others when doing more strenuous exercise such as going on hikes or going doing driving events with my father and two brothers which is my main hobby. I have had a very full and interesting life and it is hard to say what it would have been like if I was born without LCHAD. It has certainly shaped who I am and I’m not sure I would ever want to change that despite all of the challenges I have had to overcome and will face in the future.

I hope this brief biography informs other LCHADers and their parents that it is a manageable condition. Though it may seem scary and daunting I remind myself everyday that there are many worse inflictions to suffer from. You (or you child) can live a very healthy and happy existence. The FOD community is abundant and extremely helpful with many incredible parents and well qualified doctors who go above and beyond to help others. I hope that with new medical advances in treatments that your journeys will be fraught with less challenges than me. Please feel free to reach out to me or my mother with any questions you may have.