Added: 3 years ago
From: arbowmd
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  • NO ONE HAS EVER HAD THALASSEMIA

  • Careful, there are about a dozen variations of "Thalassemia" -- alpha, beta, delta and variants thereof. Don't assume that someone on the internet talking about Thalassemia has the same as you or your loved one

  • It's ok to be scared but remember, you have it, it doesn't have you! I have thalassemia as well. I have alpha thalassemia, somewhere between trait & hemoglobin h disease. You can have a baby sure.... but make sure as well your partner gets their blood tested for the trait cause that's the ingredients to have a thalssemic major child.

  • You know what's even more strange. Okay supposedly this occures more often in people with meditterain/asian/african american ancestory. I am caucasian with German/Swedish/Irish in me. Now I was born 3lbs 3 oz with an alcohol in my system. Maybe it's not only hereditary but also can be mutation.

    NO ONE HAS EVER HAD THALASSEMIA IN MY FAMILY, I am the first one. That I am sure of they've all been tested.

  • You must have been misinformed. You can't develop thalassemia on your own, it must be inhereted from your parents cause it's a genetic blood disorder.

  • Well seeing how I was adopted yeah that would say something. I know a hell of a lot about my grandparents and great grandparents. Mother too but my father is a mystery. Really don't know alot of his medical history so maybe it cam from my father.

    The only people in my family to be tested where grandparents (by law parents) great grandparents, brother/sisters by law, etc etc. Mother was tested and didn't have it but biological father never tested.

  • I get leg and back pains all the time. Does that mean anything when I'm only alpha thal. minor? Now my left leg is swollen like it was 3 weeks ago.

  • I have Beta Thalassemia minor supposedly and it is only supposed to show minor anemia. Well why is it so hard to get out of bed every morning, sometimes I can't I'm so weak. I'm so cold all the time, I have started shaking before when the temp is 72 degrees saying I'm cold. I hardly want to eat, I can sleep up to 12 hours and be tired still. I'm very pale.......does this sound like MINOR anemia to you?

  • You've pretty much told my story!! LOL I keep asking over & over, why is it minors get sick or feel like we're getting sick considering we don't require treatment?? My guess is because we may overlook things where majors are always in treatment. I hope my guess is right cause I am weak a lot more than when I was in my 20s. As for eating, I'm too much of a pig to worry...LOL.... but I know a lot of people who say they can't eat due to weakness.

  • this is like sickle cell i have sickle cell and it ruins my life i miss alot of school and go to emergency room sometimes

  • Actually, no, Ive never had a blood transfusion, which is what confuses me with other people online that have relied on them since birth. I get very tired a lot and I have constant joint & muscle pains. I was laughing it off telling my friends Im just an old fart.... hahaha, but then again, they dont have a clue what thalassemia is and I dont want to go into detail with them.

  • i HATE u thalassemia ,,, cus u ruined my life...

  • I don't blame you for saying that. I have it too but for some reason, I don't need treatment. I think I was misdiagnosed. I have alpha thalassemia but I don'tk know the severity level. What symptoms do you experience when you know something is wrong??

  • hi there,,

    actully am on transfusion since i was two months old.. i have it every 3 or 4 weeks,,

    when my hemogloben is low,, i don't get much tired but i feel it,, i get a pain in my back,, feel like to sleep alot,,

    what about you?? are you on transfusions??

    i feel stupid for saying i hate thalssesmia,, i should be thankful for the life i have ,,,

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