Patient Comments: Beta Thalassemia - Share Your Experience

Do you or a relative have beta thalassemia? Please share your experience.

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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Comment from: SRU, 13-18 Female (Caregiver) Published: March 31

I am sorry to hear everyone is experiencing these problems with thalassemia. My son has the trait and he has these flu like symptoms every three months, with fever. And he has headaches twice a week. The doctors are saying there is nothing they can do. I feel so sorry for him because he has to go his whole life like this and it seems to get worse as he gets older. How could he have all these symptoms and just has a trait! I thought maybe it was something else like allergies which it can be but the pills do nothing to help. Even painkillers won't help him. And the doctors just recently said it is due to the thalassemia because it happens so often. What if it is something else! I just don't know. He is too young to suffer like this.

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Comment from: anonymous, 35-44 Female (Patient) Published: January 06

I have beta thalassemia, but I haven't experienced any of the problems others are saying. I found out about my diagnosis when routine blood work said I was anemic. My dad has beta thalassemia (BT) and growing up, they gave him iron for anemia (thought that was the problem before they figured it out), which made him sicker. So I requested to be tested again and checked for BT, and sure enough, I have it. Still, no problems with fatigue, gall bladder, etc., as others have been saying. Basically found out on a fluke. Thought that might be helpful along with people having some kind of symptoms. You could have it and not even know.

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Comment from: Maggie, 45-54 Female (Patient) Published: June 10

I am at a loss to understand why practitioners still only define thalassemia as being only minor and major. I am a thalassemia patient who was diagnosed initially as beta thalassemia minor, but after many years and many health problems; hemoglobin consistently below 7, chronic pain and malabsorption problems, immunity issues leading to severe chest infections, enlarged spleen, and many more. Eventually I was diagnosed as beta thalassemia intermedia. There are many thalassemia patients out there who are somewhere between minor and major who do not get the help needed. Catch up doctors!

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Comment from: Opa, 55-64 Female (Patient) Published: April 12

I am to find out if I have thalassemia, as I am Greek and I hear every 2nd Greek has it. I get breathless in various atmospheric conditions and often tired. I have underactive thyroid discovered when I was 20 which had to be sorted by specialist and to do with not working with my pituitary gland. I think mine would be the minor one if so. I can't do various jobs for long without feeling drained or strange especially in extreme weather conditions.

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