Patient Comments: Beta Thalassemia - Share Your Experience

Do you or a relative have beta thalassemia? Please tell us about your experience.

Comment from: Vicki, 45-54 Female (Patient) Published: June 08

I was diagnosed with beta thalassemia minor in 1989 when they diagnosed my daughter at age 2. I am prone to being cold even on the hottest day and have aches and pain everywhere. I am tired all the time. My daughter can't handle high altitudes. We both are prone to sudden nose bleeds and bad headaches. Most of the doctors we have seen have never heard of beta thalassemia. I got so frustrated with the doctors not knowing what it was that I now take the dictionary explanation with me to any new doctor.

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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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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: Nothing MinorAboutIt, 55-64 Female (Patient) Published: April 07

I was a sickly fatigued child and began passing out when my periods started. It was up to me to figure out what was wrong with me when I asked the doctor to put me in the hospital my junior year in high school. He had no clue. A bone marrow test showed I had the thalassemia trait. It was hard news to hear. My hemoglobin stays in the 7 to 8 level and when I was pregnant I had to have transfusions as it dropped below 5. Since menopause has occurred I am usually in the 9s and sometime up to 10. If I get sick, have trauma or even surgery will cause my hemoglobin to drop. The chronic anemia has taken a toll on me. I have chronic headaches, shortness of breath, fatigue, insomnia, body pains and depression. Does any of this sound 'minor'! I wish there was some data to prove minor thalassemia patients that aren't symptom free have lifelong problems that could be managed better if doctors understood the effects on those patients.

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