One Patient's Story: Living with and Learning from Thalassemia

August 12, 2010 - High school student Aaron Cheng shares a speech about thalassemia which he recently delivered to his classmates. We share this inspiring testimony with you below.
To My Classmates

Throughout the course of this year you all have learned little snippets about my interests: my passions for science, for music, and for learning in general; however, you do not yet know my whole story. You do not yet understand what has led to my extreme love of learning, my dedication to the sciences, and my goals for the future. And through this speech, I intend to tell you about my greatest passion of all.
My life began - well, when I was born, as lives tend to do. And for a while I lived normally, a chubby little tyke who rolled around on the floor, spending my days observing the world from eleven inches off the ground, philosophizing, getting acquainted with the floor on which I crawled; however, when I was only a few months old, a five-syllable word crudely entered my life and took control of it:
“Thalassemia.”
This seemingly Martian term isn’t as alien as it may appear. In fact, this term describes a blood disease that is carried by over sixty million people in the world. But thalassemia alone isn’t what made me genetically unique. No, doctors discovered soon after my birth that I had the worst form of thalassemia, the form that affects only a thousand people in the United States, the form that renders the victim helpless and completely dependent on blood from other people: beta-thalassemia major. My innocent, happy life came tumbling down around me with this medical discovery.
And my bright, hopeful days as an infant became the darkest days of my life. You see, thalassemia, in simple terms, is a genetic mutation that affects the blood cell and causes it to be unable to carry oxygen. While a red blood cell should be plump and red, my blood is shriveled and useless. The single change in the nucleotide sequence in my DNA that causes this monstrous disease leads to a multitude of problems. Ever since I was born, I’ve had to go to the Miller Children’s Hospital in Long Beach to receive a four- to eight-hour blood transfusion every month. And every day at home I took shots to counteract the iron deposits that have resulted from these transfusions.
Thalassemia is a daunting disease. The victim must receive blood from donors, but in doing so he receives an excess of iron through the transfusion. The very process that is saving his life is killing him. Though there are drugs that help patients excrete iron, the sad fact is that not all the iron exits the body. As a result, iron deposits form in the pituitary gland, the liver, the pancreas, and eventually, the heart. So while the victim of thalassemia usually does not die from lack of functioning blood cells, he eventually dies from heart complications caused by the iron.
My infancy was the most difficult part of my life. Doctors were unable to find suitable veins in my tiny arms, so they stabbed my feet with the needles. Needles often fell out during the course of the transfusion, so one trip to the hospital could mean up to five shots. At home I continued to take shots every day to counteract the deadly iron deposits. By the age of five I had taken more shots than most adults had taken in their lifetime.
I still remember my elementary school days. I was often ostracized because of the frequency of my doctor appointments, and I missed up to three days of school per week. And when I realized that the blood that was being pumped into my body was from other living people, I felt like a vampire. Not as shiny and awesome as Edward Cullen, but a vampire nonetheless. It was during my elementary school days that I resolved to repay all of my blood donors for their generosity, to pay back all of my doctors for all the work they had put into me.
Through middle school I immersed myself in the world of academia, motivated to help the medical community all I could. Whenever I felt exhausted of studying, it only took one more visit to the hospital, one more transfusion, to make me work at full speed once again. I was determined to make an impact on the medical community, to ensure that everybody with disease as devastating as thalassemia would be able to fulfill happy, productive lives.
Upon entering high school I joined every club associated with academics that I could, such as the Academic Decathlon, science club, and math club, with the hopes of being as prepared for my future as possible. And my internal drive to learn and to contribute to society continues even as I speak.
As I write this, I realize that within thalassemia is a hidden jewel: the treasure of dedication and passion. Thalassemia is no longer a monster to me; rather, it is part of me, and it breathes the fire of passion and inspiration throughout my body. What was once a weakness, a flaw, is now my prized gem. The darker my circumstances, the brighter its light will shine. It is because of thalassemia that the motivation to succeed runs through my veins. It is because of thalassemia that I have learned to endure pain. And it is because of thalassemia that I am able to lead a productive, albeit shortened, life today.
There is something I want you all to take away today from my experience, since I’m not just up here to say my life story. Always embrace obstacles, for obstacles are actually valuable lessons cleverly disguised. Without confronting obstacles you will never grow. Obstacles will never crush you as long as you have the resolve to overcome them.