Victor from Arizona
In 1989 my twin brother and I were diagnosed with classical HCU as newborns. My parents told me they got a call from the hospital informing them that my newborn screening test was abnormal. They were concerned because they had never heard of this rare disorder before and didn't know what to expect. I was lucky enough that my parents started my HCU treatment and medications, along with food restrictions, right away when they got the information that they needed from the nutritionist.
Growing up with HCU was difficult, especially in elementary school. My mom would make my lunch every day until I was old enough to pack my own lunches. I missed out on a lot of pizza and ice cream parties. It wasn't until about 6th grade when I was able to make my own choices within the school cafeteria, and by that time I was pretty knowledgeable as to my diet and what I could and could not eat. High school was easy as well because I would just buy food from the café or vending machine to get me by until I got home from school. I enjoyed eating french fries and chips, and these were my go-to choices when I was younger in school (not the healthiest choices, but it worked for me!).
I would explain my condition to my teachers and friends by saying that my body can't break down high amounts of protein, so I'm on a low protein diet and if I eat too much of it, I can have a bunch of health problems as I get older. I eventually just started telling everyone that I was vegan, because it was becoming more popular and easier for people to understand, and if they kept prying, I would tell them I had HCU and that's why I was eating mostly vegan.
Formula and medication weren’t too hard to manage, because my parents always stayed on me and my twin brother take it, every day. I used to hate drinking the formula as a kid, even with a bunch of orange tang to mask the flavor! As I got older, I developed a different pallet and can drink the formula with no flavorings. It does not taste good, but I'm used to the taste. After 34 years, you just deal with it!
Growing up I enjoyed skateboarding, riding my bike, being outside and playing hide and seek or tag with my neighborhood friends. Even a game of baseball or tackle football was fun - we liked rough housing as kids. I loved playing Nintendo and PC games and I still enjoy gaming, especially playing RuneScape. It's been 20 years now of playing that game off and on. As an adult, my disorder has never really affected my family. My family has always been very accommodating of my diet and at family functions, they’ve always set aside a special meal for me and my brother to eat.
My biggest challenge as an adult is remembering to take or refill my medications. My loving girlfriend helps a lot now by reminding me to take my medication or order more, so that I stay on track with everything.
To help me keep track of medications, I will often write things on a calendar or set alarms on my phone. With time, it's getting easier to manage everything. Another challenge that I’ve faced as an adult was having lung surgery, and the recovery that came with it.
I’ve been dealing with Valley Fever for over 10 years now. Valley Fever is an infection that’s caused by a fungus that grows in the soil in the Southwestern US and it attacks the lungs. There is no cure for it, just a control medication. When I was 22, a lung doctor said I could stop taking the medication and my body would fight on its own and I shouldn't get sick again. However, at 29, the infection came back and had eaten away at my lungs. It put me in the hospital, and I almost died. Doctors were not sure if my HCU had anything to do with my immune system not being strong enough to fight it off or not.
After the surgery, my lung also took over 3 months to heal, and because of my HCU, they were concerned about the potential for blood clots. But here I am today, 5 years later, and thankfully there have been no further complications, and my condition is stable. That was a very difficult time, but it made me stronger mentally and physically, and now I'm back in action riding my bike and going to Muay Thai, a style of boxing that I enjoy, 3 times a week.
Being on a l
ow protein diet is another challenge that having HCU presents. Traveling is kind of hard, but I’ve learned to just research local vegan dishes whenever I plan to travel, and it works out. Speaking of the diet, I'm not always the best at it. But, for the most part, I still drink my prescribed formula and eat a vegan diet. I always check nutrition labels when available and I stay away from all meats, fish, and animal products. This has all helped me be able to manage my condition through diet really well over the years. I shop at Sprouts and Whole Foods often - you can really find a wide range of products that are vegan and low protein! It’s all about reading the nutrition labels. And I still love eating the Cambrooke pastas!
As a working adult, my HCU has been easy for me to manage. I'm an HVAC-R technician, so I mostly work alone. I’ll pack a lunch or stop and grab something at a local fast-food place, grocery store or gas station. My close co-workers know about my condition, so they’ll ask me where I want to eat if we meet up for lunch because they understand my dietary restrictions. I like to keep my friendship circle small because I've always kept to myself - I can count on two hands my friends who know about my condition. The people who just know me or I consider my acquaintance just think I'm vegan.My advice for anyone living with classical HCU is to drink your formula, take your medications, and read nutrition labels! I can't speak for everyone, but a vegan diet has been working well for me. I know everyone's body works differently, so be safe when experimenting with what diet works best for you. And don't be scared to live your life to the fullest!
Go out in the world and try new foods that work within your diet or try a new activity! I've always lived my life saying you only live once, so I'm going to make the most out of it. (Can you tell that I've always been the wild twin?). My hope for my future is just to live a healthy life and take care of my newborn son, Dazai. I'm hopeful that one day I'll be able to take a medication that will allow me to eat whatever I want without restrictions. I love food and traveling; the world is big, and I've seen so much food I would love to try one day! But, until then, I hope HCU gets more attention and support to find a cure or even something to make it okay to intake more protein.
