My Story

Real Stories from People living with Thalassemia

Rahul’s Story

“My name is Rahul Kapoor, and I was born with thalassemia, a blood disorder which requires transfusions every other week to keep me healthy and alive. When I get transfused, the whole process takes seven or eight hours, which means I have to do a lot of “working around” to fit it in my schedule. Also, on transfusion days, I am given several pre-meds which cause me to become very drowsy and keep me from eating properly or functioning for basically an entire day. There are a lot of complications associated with thalassemia, especially transfusion-related iron overload which requires a daily drug treatment, and sometimes it can be scary knowing that excess iron will damage my heart and liver if I can’t get it out. But thanks to the expert care I receive from experienced and knowledgeable doctors, I am able to lead a fulfilling and rewarding life.

“Right now, I am studying microbiology at the University of Georgia; I want to study medicine so that I can help people, just as others have been able to help me. My goal is to study hematology, concentrating on blood diseases. Eventually, I would really like to travel the world and treat patients in places where blood disorders like thalassemia are especially prevalent.

“Giving back to others is something I’ve learned from my own family. I would never have been able to handle all of the challenges associated with thalassemia had I not had a family that was willing to seek out the information that we needed and the medical care that we needed to deal with such a demanding disorder. And they have always been willing to give up a lot of their time to make sure I can stay healthy. Now I hope to one day be able to help others who face difficult medical challenges. I think that knowing from my own experience what they have to go through will help me to better help them.”

CDC would like to thank Rahul and the Cooley’s Anemia Foundation for sharing this personal story.

 

Aaron’s Story

“I don’t remember when I was diagnosed with beta thalassemia major (also known as Cooley’s anemia), but my parents tell me I was around one year old,” said Aaron Cheng. “I’ve been under treatment for as long as I can remember. Every three weeks, I receive a blood transfusion to maintain my level of healthy red blood cells.”

“Another part of treatment involves taking iron chelation medication to treat iron overload, which results from the transfusions. From infancy until the end of middle school, four times a week I would have to inject a drug called deferoxamine into my body. These injections, placed under my skin, would last for about eight hours each night. Now, instead of daily injections, I take a new oral medicine called deferasirox that I can take every night, which makes my schedule a lot more flexible. As a college student, I am thankful that treatment is becoming more manageable for people with thalassemia.”

Aaron is now in his senior year at Harvard, studying his passion—biology. Aaron has conducted laboratory research on iron overload and is studying his own disorder. “In the future, I would like to incorporate biomedical research and patient care in my career as a physician,” says Aaron. Aaron also devotes time to getting involved in activities of the Cooley’s Anemia Foundation, an organization dedicated to providing services for people with thalassemia.

“Maintaining my treatment routine is my top priority. It can be challenging at times, but it’s worth it. The future looks bright, and I’m looking forward to having the opportunity to give back to the thalassemia community.”

CDC would like to thank Aaron for sharing his personal story.

If you would like to share your personal story, please contact us at Contact CDC-INFO.