The story of Tobias
I was born relatively healthy. Sure, a bit premature and my mom had a fever, but I was home 3 days later. At 2 years old, after repeated ER visits due to severe hip pain that my mom thought was my hips dislocating and breaking, I was diagnosed with Juvenile Idiopathic Arthritis (then called Juvenile Rheumatoid Arthritis).
From that day on I would get injections into the cartilage of my knees, ankles, and hips once a month to help with inflammation and pain. We switched around medications for a bit before trying Humira, which (at the time) worked best, even if it was the most painful injection I’d ever had.
At around 8 years old I started having trouble seeing the board in class, so, like any concerned parent, my mother brought me to the ophthalmologist. Uveitis is a comorbid condition to JIA, and causes scarring in the backs of the eyes, permanently damaging sight. I needed medicated eye drops to lower inflammation and swelling in my eyes, three times a day, even needing to go down to the nurses office during school hours to have this done. It was horrible. The drops burned, there were three different ones I needed, I sometimes cried them out and we needed to do them again. It was a torturous cycle.
When I was nine, I refused to take my Humira. I hated it. It burned. It bruised like hell. I was terrified of needles. I was a kid, and I hated my mom for needing to do this to me to keep me alive so that my body wouldn’t damage itself further.
So, we switched to Remicade, a monthly infusion. 7 hours long, once a month, for 3 years. At least that got me over my fear of needles. Now I’m back on Humira due to an allergic reaction to Remicade, and both my JIA and Uveitis have been in remission since 2021.
While there is always the risk of a flare and going blind because of it, I’m happy that glasses and contacts fix it enough to be manageable. I can go to concerts and can see the stage, just like 10 year old me always dreamed of, and I dream of seeing so many more