"Thalassemia was emotionally taxing on my family, but we adapted" - Patient profile of Aaron Cheng,

My name is Aaron Cheng, and I’ve just completed my first semester of college at Harvard

University.

I don’t remember when I was diagnosed with beta thalassemia major, which is also known as Cooley’s Anemia, but my parents tell me it was when I was around one year old.  We were visiting Taiwan, and my mother and father noticed specks of blood in my diaper.  Soon afterward, doctors told my parents that I had Cooley’s anemia. 

I’ve been under treatment for as long as I can remember. From when I was an infant to when I became a middle-schooler, I took Desferal infusions four times a week.  The Desferal treatment would last for about eight hours every night, from when I went to sleep to when I woke up. Treatment now is definitely a lot more convenient: instead of having injections every night, I use the oral chelator Exjade every night, so my schedule is a lot more flexible now.  I am so thankful that treatment is becoming a lot more convenient for Cooley’s anemia patients; as a college student, I find taking a pill a lot easier than injecting a drug for eight hours every night. 

I remember that as a child thalassemia was a lot more painful for my family and me than it is now.  The most difficult aspect for me was feeling different from my friends, since I would be noticeably absent from school when I visited the doctor.  I think the hardest part for my parents was trying to deal with the disease and make sure I had a balanced life.  Thalassemia was emotionally taxing on my family in the early part of my life, but we quickly adapted to the new lifestyle, and now it feels like thalassemia is nothing more than an easily managed inconvenience. 

Besides keeping up with my medicine every day, I don’t think thalassemia greatly impacts my life.  I am still able to lead a perfectly normal college life and try new things every day.  Perhaps thalassemia might make me more tired than the average person when it gets close to a transfusion day, but I find college exciting enough that any physical effect that thalassemia has on me is usually barely noticeable. 

My family first found out about the Cooley’s Anemia Foundation when my doctor introduced my father to the association.  From then on, my family has been very involved, and I attend conferences as often as I can.  It has offered a great community through which I can share my experiences and learn from others who have thalassemia as well.  I find the Foundation to be an extremely helpful forum for patients and family; my family and I have met many friends and gotten a lot of help coping with thalassemia through the CAF.  

I decided to attend Harvard primarily because it had always been my dream school; I love the Boston area and thought it would be a great experience to live on the East Coast and learn in such an academically-driven community.  Furthermore, the Boston area is very convenient, and I am able to go to the Boston Children’s Hospital quickly every three weeks for my transfusions. 

It was such a surprise for me when I was accepted to Harvard and I knew right when I found out that I couldn’t turn this opportunity down.  It has been a great experience for me so far; I am involved in the Harvard Crimson (Cambridge’s daily newspaper), and the Harvard Square Homeless Shelter where I volunteer.  I’ve enjoyed all of my classes so far and learned so much.  Right now I am unsure what I will study for a major, but I am strongly considering molecular/cellular biology, neurobiology, or applied math with a focus on biology.  I am keeping my career options open until I find out in the coming years what I enjoy most.  

Adjusting to a new climate away from my family was easier than I imagined, partly because Harvard keeps me so busy and also because the people there are so friendly that it took a very short time for me to make a lot of new friends.  The weather is noticeably colder than sunny Southern California, but I’ve been having a lot of fun experiencing the new climate. 

The adjustment to Boston Children’s Hospital has been exceptionally smooth; every three weeks I go to the nearby clinic to get my blood drawn, then on the Saturday after I take a 20-minute bus ride to Boston for my transfusion. 

The future looks bright, and I’m looking forward to learning so much more and having the opportunity to give back to the community!