Beta Thalassemia - Share Your Experience

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What are the thalassemias?

The thalassemias are a group of genetic (inherited) blood disorders that share in common one feature, the defective production of hemoglobin, the protein that enables red blood cells to carry and deliver oxygen. There are many different mechanisms of defective hemoglobin synthesis and, hence, many types of thalassemia.

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See what others are saying

Comment from: Enjoying Life, 65-74 Female (Patient) Published: July 01

I just learned last year that I have beta thalassemia. My daughter learned she was a carrier only after having her first child six years ago. She also discovered that her husband is a carrier. I have three grandchildren and only the last child does not have beta thalassemia. Here are words of encouragement. As a child I was always cold. I am from the north. I knew I wanted to live some place where it was warm most of the time. I was never sick or in the hospital. I do sports and work out and tell myself not to stop until my mind and body tell me to stop. My family fought off cold, measles and all the childhood things and we survived. Let it be mind over matter.

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Comment from: Pete, 45-54 Male (Patient) Published: June 15

I am a 50 year old male, and in 2016, diagnosed with beta thalassemia (BT) minor when I was 10 years old. Mom is from Iraq, dad was from Lebanon. I was always getting colds and sore throats as a child, and was always cold. I wrestled in high school, and was a top athlete, but when I got tired, I became real tired. I get sick and weak when I travel on long airplane trips, 14 hours or more. I also get sick in Denver or any other place above 3,500 feet. High altitude means less oxygen. I also can't drink alcohol without getting ill. So I avoid alcohol, avoid high elevations, and seek out newer airplanes that pressurize at a feel of 3,000 feet instead of the industry standard of 5,000 feet. I also avoid smokers as that will give me a headache and I take a day to recover. I have never been admitted to a hospital. I avoid processed foods and pace myself as I am active. My mother has this too. She has survived cancer twice in the last 20 years, and was just told by the doctor (she is 84) that her two rounds of chemotherapy may have damaged the bone marrow slightly so that the production of red blood cells may be even more difficult for her. BT minor is not a death sentence, but it is a wakeup call. You simply have to take better care of your health and know your limitations. No smoking, no drinking, no processed food, no lack of exercise (you have to build up your body), and pace yourself. Most importantly you have to educate yourself, as so many doctors and health professionals are not well-versed in this condition.

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