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Author Topic: How is your thalassemia being diagnosed?  (Read 2516 times)
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mdmjane Topic starter
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« on: September 16, 2008, 11:51:52 am »

I am just wondering and wish to know from those who are having thalassemia: how is your condition being diagnosed? How did you get ti know that your are having the condition?
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caraiti
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« Reply #1 on: September 17, 2008, 04:59:25 pm »

When I was a baby I was admitted into hospital with a fever.
Through many tests and blood samples they found abnormalities in my blood cells.
My blood was actually sent around the world to find similiar blood cells.
That was when they discovered it came from greece and later the mediterrean countries.
It was named Beta Thalassaemia because of where in the haemoglobin it affects. After many disscussions and tests they agreed to call it intermedia due to the severity. It was not a major and more than minor so they went in between. Thirty years later it has now been upgraded to major because of the complex issues that are plaguing me in adult life.

Please feel free to ask what ever you want to know and I will do my best to answer you.
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Thalassaemia is a lifestyle not a burden.
amanda
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« Reply #2 on: August 25, 2009, 11:39:11 am »

So when your still a baby you've already suffers from it? How does it affect you as you grown up? Since when you have been into medication?
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drbalo
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« Reply #3 on: August 25, 2009, 12:37:40 pm »

So when your still a baby you've already suffers from it? How does it affect you as you grown up? Since when you have been into medication?

Thalassemia beta major patients are usually diagnosed when they are 6 to 7 months old. This is the time when the fetal haemoglobin changes to adult type of hemoglobin. It is because adult hemoglobin consists of alpha and beta chain, thalassemia beta patients with defective beta chain are not able to produce enough normal hemoglobins and this leads to anemia and this is how cases are detected during that period of time.
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caraiti
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« Reply #4 on: August 25, 2009, 02:13:46 pm »

Thanks drbalo for your explanation. Saves me time. hehehe Wink

Affect me as I grow up?
Complications can arise from many factors.
Because of the long term of transfusions and the ferritin rising I now have diabetes type 1 from the iron overload attacking my pancreas.
As I get older, my body isn't as flexible to get over certain illness like the common cold. Sometimes it can knock me off my feet.
Overall I can't foresee any problems as I get old if I look after myself.
You must remember that with the advancement of technology, Thalassaemics like me are living longer.
In text books our future looked pretty bleak and as I grew the text changed to my life expectancy being between 20 to 30 years old. What have I learnt? I don't believe any text book that puts a life expectancy on my life. I celebrate each day with knowing that I have people who love me and that I am doing something that I love. My future? I plan to be around along time to annoy my loved ones hehe and to teach my descendants humility and compassion.

How did I get into medicine?
I am a teacher aide based with intermediate special needs students. When I was younger I wanted to be a nurse but when I did community nursing, it put me off when you sometimes had to be firm with the old people.
My adopted father was nicknamed the chemist and I was the hospital. I learnt alot from him.  The way he dealt with his issues helped my interests as well as the knowledge that I need to know all I can about Thalassaemia if I want to know what is happening with me.
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Thalassaemia is a lifestyle not a burden.
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