Garrett from Illinois
How were you diagnosed?
My name is Garrett, and I was diagnosed with Homocystinuria when I was 5 years old. I was playing on my toy rocking boat and managed to build enough momentum to move the boat backwards enough that I ended up smacking the back of my head on a cabinet, which knocked me unconscious.
From what I’m told, I was rushed to the hospital. While some things got better, I noticed that there was something not right with my eyes and they didn’t seem to be getting better, even with the medicine they prescribed. I believe they originally thought Ihad pink eye, but later decided that it had to be one of two things. They quickly disqualified me for one of the ideas they had and were sure it was Homocystinuria. It was also discovered that my lenses had detached, and if I didn’t get them removed immediately, I was going to go blind.
So, there’s my origin story… I wanted it to be a radioactive spider that bit me, but not so, unfortunately.
How has HCU affected you, your family and relationships?
HCU has affected me in many ways, but probably not really any different from most patients with Homocystinuria. Family parties are a constant drag when it comes to food. There are always things present that I cannot eat, but people will still ask if I can eat them even if they know I can’t. I’ve had to learn to bring my own food, because most of the time all that is available that I can eat is salad or fruit – not exactly filling.
What are some of your successes with HCU?
Growing up I was told by numerous teachers that I wouldn't go to college, and in some cases was told I would drop out of high school. They would accuse me of not trying or not working hard enough. In reality, I would stay up until midnight trying to complete my assignments. I even had extra tutors to help me. I realized I had two choices: I could let them win or I could defy their expectations. While I've long been graduated from high school and am still in college, I don't let this get me down. I've gotten my associates degree, and I am about to transfer to Northern Illinois University (NIU) to pursue my passion of photography as my career. You can follow my artwork on instagram at: https://www.instagram.com/wadesworldofphotography/
What are some of the challenges you have faced?
Cost. I’m sure many with HCU are aware of how expensive low protein medical foods are. Luckily with time, there are more low protein food companies, and food choices with a little better prices. Right now my “go to” choice for staples like bread, pasta, and rice is Flavis. It seems to be the most affordable option to my knowledge. I suggest if your insurance will cover low protein food you use it. Being able to piggy back off the Gluten-free, Dairy-free and Vegan community, when possible, has made finding foods much easier than it was 10 years ago.
Eating out is a constant struggle, but has gotten better. A man can only eat so many potatoes and salads before he questions his life choices, but on a serious note food at restaurants has gotten better (big shout out to the Vegan and Gluten-free communities as my diet would be a lot worse if it wasn't for you). There are some restaurants like Noodles and Company that carry vegetable and gluten-free noodles. Other places like Mod Pizza carry a gluten-free crust and vegan cheese. Some restaurants are willing to cook the medical food even if you ask. What I'm trying to say is don't be afraid to ask and see what your options are for times have changed. There's a lot more availability now and people are willing usually to work with you if you explain the situation.
What words of advice do you have to newly diagnosed patients and families?
Words of advice I have for anyone newly diagnosed – be the best advocate for yourself that you can be. No one else knows you the way you do and ultimately you are the one responsible for yourself – not anyone else.
Get involved in the community as much as possible. This is something that no one should have to deal with alone. Ask others what works for them, whether it be recipes, different forms of medication, insurance issues, or how to go about working with others outside of your community like at school or work. I remember a former doctor I had was not very encouraging to me and my sister in connecting us with others. Reach out to others; if it wasn’t for them our quality of life wouldn’t be as good as it is. Last word of advice – do not let HCU define who you are or make you feel like a victim. You cannot rise above HCU or any other problem in life by letting yourself be a victim. You have to have the mentality of victory to rise above it as you do with all problems!