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Profile picture for mastongear @mastongear

I have Thalassemia B and I’ve seen a hematologist for years. There are new treatments out there for Thalassemia that are helpful and they are also working on a cure. I don’t have cancer, but I go to a cancer center for treatment. They check my blood and then I either receive an EPO injection or an Iron infusion and they really work. It really depends on what your bloodwork looks like. My sister also has Thalassemia and she gets B12 injections. Every person is different. After a few months of my treatment, I was even able to obtain a Hemoglobin of 12. That’s the highest I’ve ever been. It does continue to go up and down, my lowest was 8. but at least I get a temporary relief from the fatigue. There are also rumors of a new stem cell treatment that can possibly cure some blood disorders. It has been affective in curing some cases of Sickle Cell. So, if you have Thalassemia, you definitely need to see a specialist. It can get worse with age like mine did, so it’s good to get a baseline while you’re younger. Relief is possible.

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Replies to "I have Thalassemia B and I’ve seen a hematologist for years. There are new treatments out..."

Hi @mastongear, Welcome to Mayo Clinic Connect and thank you for sharing your experience with Thalassemia. Having a lower hemoglobin numbers hovering around 8 feels like you’re trying to wade through 5 feet of water, doesn’t it? The fatigue is debilitating. It’s really a relief that your treatments of EPO injections or iron infusions have been helping you.

You mentioned that stem cell transplants have been used for the correction of Thalassemia. At this time, a transplant using donor cells is the only potential cure for Thalassemia. But it is generally used for patients with severe or uncontrolled Thalassemia because of risk for other complications. And it does sound like your situation is being well handled, so that’s very positive for you.

When were you intially diagnosed with Thalassemia? Since this is an hereditary blood condition, do you remember other family members, besides your sister, having symptoms?