Ever since I was little, I knew I was different. I wasn’t allowed to eat the same food as the other kids, I was fed through a g-tube in my stomach, I was hooked up to a pump at night and every time I got the flu it meant a lengthy hospital stay. But when I was little, I didn’t fully understand what it meant to grow up with Glycogen Storage Disease. As I got older, I realized there was so much I hadn’t realized. My life is a daily battle, a life lived by the clock, constant awareness.
While other girls are thinking about life after college, marriage and babies I’m wondering if I can keep my blood sugar from crashing, when I should take my next dose of cornstarch (a slow releasing starch that has quite literally saved my life) or if this pain in my stomach will send me to the hospital.
Currently there is no cure for GSD. And while there is treatment, it is a game of trial and error to figure out the best methods for keeping me stable. I get labs checked frequently, ultrasounds and doctor’s visits to monitor my condition, and when I get sick I’m in the hospital on IV’s until I stabilize. It is hard, and there are so many days when I don’t want to fight anymore. How do you fight against something that is literally makes up who you are? How do you fight biology?
The biggest thing for me, and I think for many other patients and families living with GSD, is knowing that you aren’t alone. My life consists of round the clock treatment, big fancy medical words and hospital visits, and the most important thing when walking through that is having people in your corner to support you, pick you up after a long day and be strong when you can’t be anymore. These people, my support team, are my favourite reasons to never give up. Their smiles, encouragement and ability to hold my hand gives me strength. Find your people, find what gives you hope, and use them as your reasons to never give up.