6th National Thalassaemia Conference and Workshops

laiba i read ur post u tansfuse at gangaram ...... when i'll return i hope i'll meet u there .. maybe u know kamran with maulana looks-- he's my very close friend

Waleed ,
yaar you deserve that all  ,  ...  



Umair

Guys!! I can't tell you how happy and proud i feel when i see thals from Pakistan who believe that they can do anything and they have accomplished what they wanted you all must know there were days when thal was (and in some regions it still is ) was considered a death sentence,parents were told (and are still being told unfortunately) that their kids will be lucky to live their teenage lives,i have lost a cousin to thal,i was only a kid at that time,but when my daughter was diagnosed,my aunt,who lost her daughter to thal,she was devastated,she didn't say much but her face was a story itself,story of despair and hopelessness,and i was looking upto her at that time knowing that she had a daughter with thal,but i am so happy that i found this forum,where i met people like you guys and other who gave me the hope that there is so much awaiting for my daughter in her life,and one day she might be writing this herself here,with a solid career and life.

I feel like i am rambling now so i should sign off  just wanna say again,i am so proud of you guys  .

Zaini. 

hi!
waleed bhai
yes i transfuse from ganga ram... but i don't know kamran bhai...where are u now a days??in pak????or not
hope to see u soon
laiba mukhtar
allah hafiz

im in riyadh ,,, willb e reutning this thursday or saturday inshaALLAH ....

Zaini,

I am very happy that thals all over can find hope in this site. When I was a member of TIF Board of Directors, some ten years ago, we went to Amman, Jordan, to hold a Board meeting there and at the same time to talk to some local associations and offer our help. On the last day there, we, the thals-members of the Board of Directors gathered and talked in front of say 300-400 people, Arab doctors and patients. The feeling I got there, was that each and every thal in the crowd was looking at us trying to find hope in our faces. There were thals and parents and doctors and nurses all related to thalassemia. It was very touching and we did our best to show them that their life is not over, that there is future, there is hope.

That is exactly what one can find in this site: Hope. And that is what you describe when talking about thals from Pakistan and I would add from all over and especially from countries where people are not yet convinced that thal is not a fatal disease.

That is why this site reminds me of that day I lived in Amman.  You see, I get the same feeling.

Let's try to keep this site going. It is a window of hope to every thal.


Lena.

Lena,

I can't even imagine where i would be with out this forum,it has given me so much knowledge that now when i talk the most arrogant doctor in the hospital does a double take and try to listen to me  and being informed is really necessary,we all know that.

Zaini.

Lena,

I can't even imagine where i would be with out this forum,it has given me so much knowledge that now when i talk the most arrogant doctor in the hospital does a double take and try to listen to me  and being informed is really necessary,we all know that.

Zaini.

InshaAllah ur child will succeed ... just control iron ... raise her mentally strong, educate her to our beliefs and worldly knowledge . InshaALLAh she'll succeed here and most importantly HereAfter .

I'll write sumday about docs and nurses attitude ... what actually is and what actually shud b ...a long harsh words i want to put on them ..but right now im watching indian SONY TV CID

waleed u r definitely super normal............

waleed and zaini sis,

in our society being detected as thalassemic is very alarming, i had to bear the same feeling a month ago when najaf was diagonised, every one (outsiders) had the feeling that there was no future of najaf, and she would be lucky if she survived till teenage........ they gave the examples of other thalassemics....there attitude was as though they r condoling us
 every time on phone and whenever i visited home i was trying to convince my family that INSHA ALLAH najaf will live a normal life.........

and as far as doctor's behaviour is concerned i just experienced it last week.......
we visited Children Hospital Lahore and i had a very sad feeling that no one is ready to hear us, they just kept on referring to other doctors, they didnt show any interest,
the doctors very arrogant and not ready to answer my questions.........
and the worst of all, the most senior doctor told us that there is no cure except transfusions and he said there was no need to come again to me just keep on transfusing her. no medicine.... no special dietry advice........nothing at all..........
he didnt even said a single word of hope for us............
i dont know what king of experience waleed has but it was my worst......

Abbas

Abbas,

What you said,it happens,almost all of us has suffered through this experience,so the key is to educate your own self,and all doctors are not bad,some are semi bad too  who might give up their arrogance and will listen to you eventually,but you'll have to be patient,at least this has been my experience.To tell you the truth there are some awesome doctors in the world like Dr Vichinsky and Manal's son's doctor (i am sorry i can't recall the name) ,they are working seriously for patients,and in my city doctor who has inspired me a bit is Tahir Shamsi,i haven't met him much but he seems like a competitive one,and we have heard praise for Dr Javeria from Umair,so eventually you'll find one too.

Zaini.

Yes Abbas, i agree with Zaini, you will definetly find a good doctor, keep searching and educating yourself.

Zaini, our hematologist is Professor El Beshlawy, may God bless her

manal

Thanks Manal, I couldn't recall her name at that time

Zaini.

New dates for National Thalassaemia Conference have been announced by Thalassaemia Federation of Pakistan (TFP).

6th National Thalassaemia Conference and Workshops will now be organized from 17th to 19th of Dec, 2009 at Fatima Memorial College of Medicine and Dentistry, Shadman Colony, Lahore.

For further info about the conference, please contact TFP directly at their numbers: 042-5181549, 042-5181749.

yes sisters,

i got a good doctor, we are also consulting Dr. Javeria i heard about her from umair, so after dreadful experience at hospital, we went to Dr. Javeria
i have a lot of soft words for her, she was a total contrast. when Najaf showed signs of anxiety in front of her she gave her a toffee, pampered her and Najaf went OK.
i agree that not all of them are arrogant but still lot of them are so...............