Patient Comments: Alpha Thalassemia - Symptoms

What are your Alpha Thalassemia Symptoms?

Comment from: PKumai, 45-54 Female (Patient) Published: September 19

I found out I had alpha thalassemia trait when I was 21. My mom and sister got tested too, and they both have it. We are of Northern/Eastern European descent, so this was very surprising. The only reason my doctor at the time could explain it to me was because she had spent several years working in Hong Kong and saw a large number of cases. Growing up, I thought I was really sick because I was so tired all the time. I couldn't concentrate, I couldn't maintain enough long term stamina for any exercise program, etc. No doctor has ever been able to tell me why I feel this way, because according to them, I should have no symptoms. Out of frustration and desperation, I've changed my diet dramatically (vegetarian and no sugar) and maintained a very strict sleep pattern. I've seen improvements in my ability to concentrate, and I exercise regularly (admittedly, that is still a struggle). It's frustrating though, because I keep looking for other people who have symptoms that match mine, people who have experienced the same degree of fatigue that I have. With this condition, everyone's experiences seem to be different.

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Comment from: Greg, 55-64 Male (Patient) Published: April 11

I have been tired all of my life and have always been told I was out of shape. My family has a history of being anemic and since childhood and I have always taken iron just like most of my family. I did a search of "blood disorders that affect blacks" I came across alpha thalassemia and asked my medical team about being tested and the results were positive for alpha thalassemia trait/minor. The iron was immediately stopped and the congestive heart failure (CHF) has gotten better. I have always gotten blood transfusions over the years. My family also has sickle cell. My hemoglobin is checked now so that I can get transfusions when needed. I also have been cautioned about not getting enough blood to bring my levels up to normal ranges because that might be fatal. I am 57 years old and a gene from both chromosomes are missing and I don"t produce enough blood. My daughter has been anemic for most of her life and now my granddaughter is having the same problem at 5 years old. I"m still learning since my diagnosis was only 3 months ago.

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Comment from: shell, 25-34 Female (Patient) Published: March 21

I am an African and never new anything about thalassemia, until I came here and got pregnant. i was told to go on for a special test for my kid each time I fall pregnant which I did. Thanks to God my first two boys is thalassemia free and my third born (a girl) is also beta thalassemia just like me. My little baby girl is only six month now, we did the test and is still waiting for the result hopefully she won't be a carrier too. I am doing very great by the Grace of God.

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Comment from: sam, 25-34 Female (Patient) Published: April 22

I have alpha thalassemia trait, which was diagnosed when I was expecting my first child. Many blood tests were done, and by the eighth month of my pregnancy, they declared that I am suggestive of alpha thalassemia. Fortunately, my husband was �normal,� so my children didn't weren't affected.

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Alpha Thalassemia - Diagnosis Question: How was your alpha thalassemia diagnosed?

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