I'm 17 and was just diagnosed with Beta Thalassemia today. No one would expect me to have it, I'm from the U.S. and very, very white. I don't understand much about it, just that it runs in my family and could be causing most of my headaches and fatigue and stuff. As soon as they called I was crying. My dad had it too. I'm scared and don't know what to think..
I am really surprised by what you say because low iron is the norm among BTM people.
My iron stores throughout my life has been always lower than normal and in some occasions (when I felt the strongest fatigue ) was at dangerously low levels!!
You don't have to over-do-it by taking daily supplements but eating Spinach and Lentils once a week as well as Parsley with your salad will not cause you any harm!
I come from the Mediterranean region and have β Thalassemia Trait.
I think that most of you are exaggerating as this condition is NOT an illness but more of a "hidden" characteristic.
For those who are not aware of it, β-Thalassemia Trait (or minor) people are self immune to Malaria and have lower risk of coronary disease than people who don't carry the trait!
As far as the fatigue, migraines and all the other effects that most of you describe, these are mostly caused due to Low Iron which is one of the bad things about the trait.
If you supplement your self with Iron whether this is by iron tablets or by nutrition (parsley, spinach, lentils for example have high levels of iron) you will not have any of these symptoms :)
Yes, I also have scoliosis along with Thallasemia. I was shocked to hear they are related! Please let me know more about this.