I Just Got My Diagnose

I am a 17 yearold girl , I am always tired and I have some kind of weird pain all over my body. ( I live in the netherlands where there are only 200 people with thalassemia ) After two years of all kinds of tests they finally found out what is wrong with me. I have thalassemia minor. I have headaches all the time but I just learned to live with that I guess. It's really weird that I can go 4 days without sleep and that I feel better when I sleep less. Does anyone else have that? I'm in my last year of highschool now and I've always wanted to become a docter, is there anyone who had thalassemia minor and studied medicin? I also wonder how old I could get with thalassemia.
lamalex lamalex
3 Responses Sep 11, 2013

Please see my story! I has tons of answers :)

Hello, I am 16 yrs old and I have Thalassemia Minor Beta. I was diagnosed 1 or 2 years back (14 or 15). The doctors thought I was anemic (lack of iron) all these years. So every month they took blood from me, I think it started when I was 6 or maybe younger. So from 6 or younger I complain to my parent about these irritating continuous stabbing pain in my joints and bones, headaches, dizziness and other headaches when sun hits my head. Oh and nothing really helps or NOTHING helps so far..

I have thalassemia minor as does my dad and my grandmother did and so on. My grandmother passed at 66 because her blood specialist was giving her iron infusions and we did not know anything about thalassemia to know better at the time. It wasn't until right after she died that I found out you are never supposed to take iron. I am 31 almost 32 and have 3 children that all have thal minor also. Just wanted to let you know that you can still expect a full life even if you have thal. The thal major is the one that is more life threatening. I do have a lot of other health issues and pain from my thalassemia. I have fibromyalgia, chronic fatigue, liver disease, enlarged spleen, and more. This is not everyone I have read of people that have a normal life with thal minor. I wish you the best! Michelle