REPLAY: Thalassemia Myth-Busting: Part 1

Statement number one, true or false? Everyone with thalassemia gets tired, so it's not worth bringing it up with my healthcare team.

That one is false.

I think this is such a good one to start with because it feels like it would have been true.

Obviously, being tired and feeling fatigue is a big part of thalassemia and many of us feel it.

But just because we feel it often doesn't mean it's not important.

You tell me what you think, Kevin, but I'd like to widen that even to any quote unquote thing.

a normal feelings in your body, any kind of symptoms, even if you feel it often or want to brush it off like it's not a big deal.

I think telling your doctor about it can actually give them a lot more insight into how you're doing and kind of what your care routine should look like.

What do you think?

You know, Nina, I completely agree with you.

And is that the reason why the statement is false is because it's definitely worth bringing up with your healthcare team.

I think everyone should bring up their symptoms, no matter how little they think about it.

I think it's important not to under appreciate the fatigue that someone with thalassemia feels.

And The data out there supports this.

We have clear data from patients all around the world.

It's not just limited to one country, to another, but all around the world, indicating that the fatigue that people with thalassemia experience is directly related to their hemoglobin level.

And not only just the hemoglobin level, but also the type of thalassemias that they have.

to not bringing up to the healthcare team to minimalize it is definitely not the way to go because there are things that we can do as healthcare providers working with you, with the patients that we can help with to improve your energy level.

I think that's a good point is that while it might be a common symptom and a normal feeling to feel tired, There are still ways to minimize that.

So you might have come to terms with feeling tired often, but maybe you don't have to feel it as often or as tired once you figure out how

to tackle that with your doctor.

All right.