Beta Thalassemia - Share Your Experience

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Do you or a relative have beta thalassemia? Please 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: 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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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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