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Living with Thalassemia: Questions & Support

Started by Thomas Johnson8 · · 👁 4 views · 0 replies

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Participants Thomas Johnson8
Thomas Johnson8 Thomas Johnson8 NewcomerOP
3 messages
joined Sep 2010
#1 ·
So, my mom’s husband just got diagnosed with thalassemia minor—it’s this blood disorder thing... and now they’ve gone and done these super deep blood panels for our oldest girl because she’s always been a bit on the sickly side, and it turns out she has a mutated gene too, which means she might end up dealing with the same stuff down the road... I'm feeling a little lost because the doctors aren't really giving us much to go on, mostly because it isn't something you "cure" so much as something you just manage your whole life, especially since you have to be incredibly careful about iron intake and all that... Has anyone else here dealt with something similar, or maybe knows a bit more about how to navigate this? It’s just a lot to wrap your head around...

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