International Thalassemia Day: Rahul's Story
Thalassemia is a group of blood disorders passed from parents to children through genes (inherited). A person who has thalassemia makes fewer healthy red blood cells. Their red blood cells are unable to produce enough hemoglobin, the protein that carries oxygen throughout the body. People who have severe thalassemia require lifelong blood transfusions.
"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."
Signs and Symptoms
A lack of oxygen in the bloodstream causes signs and symptoms such as:
- slowed growth and delayed puberty
- bone problems
- mild to severe anemia
- enlarged spleen, liver, or heart
Symptoms depend on the type and severity of thalassemia a person has. Someone can carry the thalassemia gene without having symptoms.
- If you have a severe type of thalassemia you might need regular blood transfusions. Red blood cell transfusions are necessary to provide a temporary supply of healthy red blood cells with normal hemoglobin capable of carrying the oxygen that a person's body needs. Today, most patients with some forms of thalassemia require red blood cell transfusions every two to three weeks, amounting to as much as 52 pints of blood a year. These blood transfusions allow people with thalassemia to feel better and enjoy normal activities.
- Multiple transfusions that patients receive can lead to too much iron in the body. This is known as iron overload. Treatments, known as chelation, reduce the iron overload that occurs. With proper treatment and regular medical monitoring, people with severe thalassemia may now lead long, healthy productive lives.
Living Healthy with Thalassemia
People with a severe form of thalassemia can benefit by the following:
- Get an annual comprehensive checkup at a Thalassemia Treatment Center (TTC). You can also have your doctor contact a TTC for more information on your care.
- Understand and adhere to your treatment regimen in order to reduce complications and stay healthy.
- Contact the Cooley's Anemia Foundation, a patient organization, for more information about services for people who have thalassemia.
Thalassemia Treatment Centers
Thalassemia Treatment Centers (TTCs) are specialized healthcare centers that bring together a team of doctors, nurses, and other health professionals experienced in treating people who have thalassemia. CDC currently funds 7 TTCs in the United States. In addition, there are a number of other treatment centers associated with these TTCs.
Each thalassemia treatment center provides access to multidisciplinary healthcare professionals:
- Hematologists (doctors who specialize in blood)
- Orthopedists (doctors who specialize in bones, joints, and muscles)
- Genetic counselors
- Social workers and other mental health professionals
CDC's National Center on Birth Defects and Developmental Disabilities conducts the following activities:
Thalassemia Treatment Centers
CDC invests in identifying, monitoring, and investigating blood disorders such as thalassemia so that we can better understand the number of people affected and the impact of the disorder. A core activity is our collaboration with TTCs to provide care to address all needs—physical, psychosocial, and educational—of people with thalassemia.
To better understand the challenges of keeping up with thalassemia treatment, CDC funded the Cooley's Anemia Foundation to conduct a series of town hall meetings with people who have thalassemia. These town hall meetings provided a forum to better understand the patient perspective on following treatment recommendations.
CDC's Blood Safety Program
The availability of safe blood is an important public health issue for people with thalassemia because of their need for regular blood transfusions. People with severe thalassemia require frequent blood transfusions. Blood safety monitoring helps to detect known and emerging infections that could be transmitted through the frequent blood transfusions they need. CDC currently monitors blood safety for people with thalassemia through the Thalassemia Data Collection Project. This project focuses on people who receive care at CDC-funded TTCs. This information will provide a better understanding of how to reduce or prevent some of the complications of thalassemia.
- Thalassemia Homepage
- Blood Disorders Homepage
- Cooley's Anemia Foundation
- Thalassemia International Federation
- CDC's National Center on Birth Defects and Developmental Disabilities
CDC works 24/7 saving lives and protecting people from health threats to have a more secure nation. A US federal agency, CDC helps make the healthy choice the easy choice by putting science and prevention into action. CDC works to help people live longer, healthier and more productive lives.
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