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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Comment from: Elizabeth, 65-74 Female (Patient) Published: April 29

I was diagnosed with beta thalassemia in the early 1970s, in fact my mother and I were the first Anglo-Saxons in Australia to be diagnosed with this condition. At first the medical profession thought we had lead poisoning because of the odd shape of our red cells. Like others on here, I have suffered all my life with shortness of breath (no heart problems) and fatigue. In my immediate family, my mother, I and one brother have beta thalassemia, and I have passed it on to one daughter. Both Mum, myself and my daughter have had miscarriages and gut issues. Our energy seems to go in spurts, we go okay for a while and then crash. Any viral infection pulls our hemoglobin down lower than normal which is generally around 10.1 to 10.3 but when we"re sick it goes down into the 9s. We all have a bleeding tendency as well. I don"t know if this helps anyone, but I was told never to eat broad beans, perhaps they are too high in iron, and never to take anything that has high levels of iron. Iron tends to deposit in heart, liver and spleen and the body can"t access it. So, it can be potentially dangerous. Before mum was diagnosed she was given Iron injections which made her chronically ill. We now realize why. Not sure whether anyone else has this issue but all four of us also have enlarged livers and enlarged spleens; I don"t quite understand this.

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Comment from: Called Hypochondriac, 45-54 Female (Patient) Published: May 22

I was diagnosed with beta thalassemia minor back in college when, after experiencing fatigue, shortness of breath and other signs of anemia (blood tests), my doctor had me tested. I was told by everybody (including doctors and hematologists) that there are no symptoms other than the mild anemia and that there is nothing that can be done. I was taken off my prescription of 3 iron tabs per day. In my early 40s, I was diagnosed with osteoporosis. At 50 I sometimes cannot get out of bed during my period and it seems I have lots of bone/muscle pain. I have always exercised quite frequently, but have now cut back as recovery seems to take much longer. Age related or thalassemia - I think there are more problems cause by the trait than doctors are aware.

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