Discussion Forums > Thalassemia Major

life with thalassemia

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Andy Battaglia:
Umair,

I appreciate your honesty. I don't think anyone can answer this question the way patients can.

Bobby:
I stop to think about the hardships that come with Thal and I want to think it was terrible, but in reality it wasn't. I had my share of illness. Always being the first to get sick. There was the tiredness and constant Dr's visits to check my blood at a young age. I think this is where the resilancy of children come into to play. I grew to like Dr's visits and hospitals. Getting a blood transfusion was like a days vacation. Friendly nurses, hamburgers and fries, all day tv. I still played with my friends until dark and even though i was told not to play sports I played basketball in high school. yeah, I sucked, but I had fun. I was always the smallest, but smartest so it all evened out. After a summer of playing and eating I grew to be the 2nd tallest in my class.

I am now Thal intermedia and even though I'm high energy I still struggle with spells of tiredness. I try to manage it as best I can by eating well, excercising and taking my vitamins. I'm 34 now and I have two healthy kids and a wife. I wouldn't change anything. I like my uniqueness.

I can't speak for how my parents felt, but they seemed to manage the situation well. My sister also has Thal, but she's a minor and hardly ever had any problems.

Zaini:
Reading Umair and Bobby's posts,u can see how everyone takes thal differently,although both are correct in how they feel,but its a matter of how an individual would feel.

Being a parent,i'd say there are some difficulties,it can be tough financially sometimes,but other then that,my daughter never had any major health problems regarding thal,but again she is so young right now,and we do make an effort to keep her healthy by giving her timely transfusions,proper chelation and most needed supplements.So all in all,life can be a bit difficult sometimes with thal,but it ain't easy anyway,and what life throws at you just makes you stronger.

Zaini.

Narendra:
As Andy said, no one can answer this as patients and parents. But, here are a few factors to consider.

-Location where you stay, so thals/parents can gauge of the management of thalassemia (blood transfusions), quality of blood, hospitals etc

-Social Impact due to life with Thalassemia

-Personal Financial Situation

-Parents/Family Health (This might be a secondary point but sometimes unhealthy parents can have a tough time managing).

-Support Group around (Families comes first but sometimes they might NOT be around to help). Sometimes, friends are much better as they understand more. ThalPal is surely a huge plus when it comes to getting support vitually!!

-Cures for Thalassemia (At the current time, only few options but may be in future, there might be more)

Umair - As Andy said, it is good to be honest and NOT draw a rosy picture when it is NOT.

questions:
Thank you all for your comments!  You have been so helpful! 

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