Beta Thalassemia - Share Your Experience

Not ready to share? Read other Patient Comments

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

Share your story with others:

MedicineNet appreciates your comment. Your comment may be displayed on the site and will always be published anonymously.Patient Comments FAQs

Enter your Comment

Tell us a bit about your background to make your comments more useful to other MedicineNet users. (Optional)

Screen Name: *

Gender of Patient: Male Female

Age Range of Patient:

I am a: Patient Caregiver

* Screen Name will appear next to the published comment. Please do not include your full name or email address.

By submitting your comment, and other materials (collectively referred to as a "Submission") to MedicineNet, you grant MedicineNet permission to use, copy, transmit, publish, display, edit and modify your Submission in connection with its Web site. MedicineNet will not pay you for your Submission. You represent that you have all rights necessary for MedicineNet to use your Submission as set forth above.

Please keep these guidelines in mind when writing your comment:

  • Please make sure you address the question asked.
  • Due to the overwhelming number of comments received, not all comments will be published.
  • When selecting comments to publish, our staff will choose those that are educational and complement the topic. Please try to stay on topic.
  • Your comment may be edited. We would typically edit comments to make them clearer and more readable. We will remove personal information such as last names, email and web addresses, and other potentially harmful information.
  • We will not notify you if your comment has been published. We suggest that you check back on the topic article regularly.
  • We do not provide medical or healthcare advice, treatment, or diagnosis.

Thank you for participating!

I have read and agree to abide by the MedicineNet Terms and Conditions and the MedicineNet Privacy Policy (required).

To prevent our systems from spam, please complete the following prior to submitting your comment.

Please select the black square:

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.

Return to Beta Thalassemia

See what others are saying

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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes


Get the latest health and medical information delivered direct to your inbox!