Disease or diseased?

I think this topic is very interesting.  I actually started a topic in thalassemia intermedia(because there's no HBH forum) but because what I type was too long and I lost half of the content when I want to correct something so I have to go back there and rep-do it on a word document. 

I have never thought that I would be a thal until I was pregnant with my son and battering with series of test and even received "extra" nutrition which I'm not supposed to receive... yes, iron supplement which result to my poor health now.  I'm not sure whether it do contributed to the factor but when I see back my blood test, those I took before I had transfusion, I think I made a better test result in my LFT, etc test compared to post transfusion with all the excess iron in my body. 

I made a post earlier in the thalpal facebook page but my mum who saw it called me(yes, I added my mum to my fb friends) and said I should not post it in the fb page because I'm telling the whole world our "family problem".  Yes, being a thal is a family problem but we don' thave Aids or other diseases spreadable by just talking or touching us.  To the extend of this society, sometimes ignorance paid its own price.  Is there a phrase being not knowing is better than knowing?  Being a thal means you can't find a life partner because you have a DISEASE?  I told her many times, she has to tell my brother about thal before he gets married, guess what?  She didn't and she said, what to do, they are already married!!  Hopefully my brother is fine but he doesn't look as sickly as I do when we are younger, he can cycle 10km for fun and donated blood while I can't.

Another main obstacle I face in life is my mother-in-law.  When I was pregnant, no amount of iron supplement and  by food can make any changes on my HB.  She starts telling me, even now, when she first saw me she thinks I have a problem.  I'm always pale. So does that mean if you know that I am a thal, you would not let your children befriend a thal and get married?  Unti whatever happens l now, I find it hard to tell her anytime I feel sick I just bear with it as a non-thal will not understand what we are going through in life.

Its a high time society need to change because this affects life and future generation.  We don't feel great being a thal or even to pass on the disease to our children but whatever happens, life still goes on.  Societies need to change...

Thanks for u'r topics...
It is obviously truth....
what can we do?when i thinking about my kids future...only tear is coming out...........
So only we can pray to ALLAH.oh Allah HELP US..........................


A FATHER....

Every body wants a healthy mext genaration. Thalassemia is not a big wall for this expect. Only and only conciousness can solve this problem. As we all are thal patient we have noting to loss. All is well. We have no hand for our diseases. So why we have to live so small minded? As poet  Sukanto said that we have to  do suitable this earth for our next genaratinon. So why depressed? Go and enjoy the world.

Of course we would like to enjoy this world that much but sometimes because of our low hb, we feel a bit "upset" because we just can't be at the same par with the people without the same disease.  Never in their life they need to face having low hb which associates with many other problems with it, therefore they cannot understand how the extend of this disease and neither do we want to make them feel we're weak.  Therefore we adapt, in front of them we put up a mask but inside us, we know ourselves better, where is our limit.

No doubt at times, we are depressed but we try to keep up our cheerful mood.  We have no control of the disease but in any way, we try to control it.. but reading and understanding and keep up with the news, hoping in time to come there are more breakthrough. 

I doubt many of us won't freak out everytime we need to take the blood test and see the hematologist.  If we are in control, that means its a good sign but for those with serious problem, we only worry we have more bad news at each meei  After reading so many articles associated with thal, its hard not to be depressed.   The question is how long can you be in control before everything starts to breakdown.

What reply i can post? A heavy sorrowness (not depression) has covered me after reading your realization. After we all have to go forward? And we shall overcome one day surely.  Our society will be changed better. But it is a matter of time. Take care. One person was sad because he had no shoes but when he see a man without a leg his own sadness has disappeared.