My name is Alex, and I’m a 18-year-old Senior at Summer Creek High School. On the surface, I seem like any other high school student, balancing school, friends, and family while trying to figure out who I am and where I’m headed. But underneath it all, I live with sickle cell beta thalassemia, a genetic blood disorder that shapes almost every part of my life. Most people don’t know it’s there, but it affects me every day.
I was diagnosed with sickle cell beta thalassemia when I was a baby. My parents told me that I used to cry for hours because my hands and feet would swell up with pain. The doctors explained that my red blood cells are shaped like crescents or “sickles” instead of round discs, which makes it hard for blood to flow through my body. On top of that, the beta thalassemia part of my condition means my body doesn’t make enough healthy red blood cells, so I’m almost always tired and short of breath. It’s like my body is working against me all the time.
School has always been tough because of my health. I’ve had a 504 Plan since elementary school, which is supposed to help make things easier for me. It allows me to take extra time on tests and assignments when I’m not feeling well. I can carry a water bottle with me to stay hydrated, and if I need to rest, I’m allowed to go to the nurse’s office without getting in trouble. I also don’t have to participate in PE if I’m not up for it because too much physical activity can trigger a pain crisis.
Pain crises are the hardest part of living with sickle cell beta thalassemia. They come out of nowhere,sudden, stabbing pain in my chest, back, or joints that feels like my bones are being crushed. Sometimes it lasts for a few hours, other times for days. Last year during finals week, I stayed up late studying because I didn’t want to fall behind. By the time the test came around, the pain hit me so hard I couldn’t even sit up straight. My 504 Plan let me reschedule the test, but it still felt like a setback. It’s frustrating when your body holds you back no matter how hard you try.
Learning how to advocate for myself has been one of the biggest lessons of my life. At Summer Creek, most of my teachers are understanding, but not all of them get it. I remember a substitute accusing me of faking my pain to get out of a math test. I felt embarrassed, but my mom stepped in and reminded the school about my 504 Plan. Over time, I learned how to stand up for myself. Now, if I feel a pain crisis coming on or know I’ll need more time to finish an assignment, I’m not afraid to speak up.
My friends have helped me get through the hard times. At first, I didn’t tell many people about my condition because I didn’t want to seem weak. But as I got older, I realized that the people who care about me will understand. My best friend, Mya, has checked on me while in the nurse’s office more times than I can count. She knows when I’m in pain even when I try to hide it, and she’ll distract me with funny stories, or entertain me with her situations that she has present. My friends also remind me that I’m more than my illness. I’m still Alex, I love music, I’m a Volunteer for the dental assistant program , and I have big dreams for the future.
The hardest part of having sickle cell beta thalassemia is how unpredictable it is. I can go weeks feeling fine, and then out of nowhere, my body will shut down. I’ve missed a lot of school because of it, and sometimes I wonder if I’ll ever be able to keep up. But I’ve learned to focus on what I can control. I try to stay hydrated, avoid overexerting myself, and pay attention to the signs my body gives me. My 504 Plan gives me the flexibility I need to succeed without putting my health at risk, which helps me feel like I have a little more control over my life.
Despite everything, I’m hopeful about the future. I want to go to college and study biology, maybe even work in medical research to help find better treatments for people with sickle cell disease. I know the road ahead won’t be easy, but I’ve already proven to myself that I’m stronger than I thought. Living with sickle cell beta thalassemia has taught me resilience, patience, and how to ask for help when I need it. My life isn’t typical, but it’s mine, and I’m determined to make the most of it.