Hi everybody

Just by "googeling" I got to this great page. I'm originally Italian but was born and live in Switzerland. I've thal.major and 40 years old.
My age may be a hope for many of you and also for many parents which are concernt about "how old" we can get with thal.major. I wanted to say that because my experience about the age was not so great, from the beginning my parents were told that I would die at the age of 9 and they were so scared and too protective about me. When I was a teenager I was told that I soon would die, but then they saw that I reached the age of 25 and then they stopped telling me that.
Juhuuii now I'm 40
I also would like to tell you how important "chelation" is. I was doing "desferal" since the age of 12. Without the great support of my mum I'm sure I would not be here writing to you. As hard as it was for my mum she was inserting the needle every evening and saw me suffering. But I knew that she was doing it because she loves/adores me. And I'm so thankful to my mum (she is my guardian angel), so please mum's out there support your children as much as possible. At the age of 18 I started to put the needle myself, it was horrible but I knew if I would give up I would die. I think all these suffering and discipline made me the strong women I am today.
 My Motto is: NEVER EVER GIVE UP - life is so beatiful
After 27 years of needles I started on Exjade and it seems to work apart from some stomache pain.
All the best for all of you, and remember never give up

Just by "googeling" I got to this great page. I'm originally Italian but was born and live in Switzerland. I've thal.major and 40 years old.
My age may be a hope for many of you and also for many parents which are concernt about "how old" we can get with thal.major. I wanted to say that because my experience about the age was not so great, from the beginning my parents were told that I would die at the age of 9 and they were so scared and too protective about me. When I was a teenager I was told that I soon would die, but then they saw that I reached the age of 25 and then they stopped telling me that.
Juhuuii now I'm 40
I also would like to tell you how important "chelation" is. I was doing "desferal" since the age of 12. Without the great support of my mum I'm sure I would not be here writing to you. As hard as it was for my mum she was inserting the needle every evening and saw me suffering. But I knew that she was doing it because she loves/adores me. And I'm so thankful to my mum (she is my guardian angel), so please mum's out there support your children as much as possible. At the age of 18 I started to put the needle myself, it was horrible but I knew if I would give up I would die. I think all these suffering and discipline made me the strong women I am today.
 My Motto is: NEVER EVER GIVE UP - life is so beatiful
After 27 years of needles I started on Exjade and it seems to work apart from some stomache pain.
All the best for all of you, and remember never give up

thats what v thals really need ............. I also have a saying " FIGHT .......... TILL DEATH " .....that was a dialogue in MUMMY (part2 ithink) when heroe's friend had couple of soldiers left and a huge army came infront of them ... he uttered ........TILL DEATH ............

May u live  more than that . U r really a role model who's been desferal complaint all her life ... and a very very very strong hope

Hi flyaway,

I am really glad to read your life story,its promising,encouraging and hopeful .

About exjade and stomach ache,try changing the time you take it,it might help .

Zaini.

Thanks Zaini & Waaled, I'm happy to give some hope with my story. I think this is what we all need, comfort and peoples who understands what we are going through our whole life. There have been many hard times and will always be with such an illness. But with the support of the familly and real friends we'll cope.
Best wishes, flyaway

hi ya Flyaway ,
 how r u ? ...

Best Regards
Take Care
Umair

hi Flyaway,

u r definitely an inspiration and hope for young thals.....
Keep posting

Abbas

Thanks nice friend for the warm welcome, for now I'm doing fine hope you too.
Thanks Abbas, I will :-)

welcome flyaway!

it is really great to have you here on the forum. You will find everyone very supportive, encouraging and friendly..

A few decades ago it was a common perception that thalassemia patients die when they reach the age of 10-12. This is a myth now. We all the thalassemics (thanks to technolohgy and medical sicences) have proven that if provided we can do anything like other normal beings.

Fouad

Hello and welcome Flyaway! Isn't it that this is a great site?  Anyway you sure is right many pple may not understand what Thalassemia is   but it's not that hard to manage it with great compliance,strength and faith   ppl with thalassemia can and will survive. In fact many of the doctors here also told us that the best  age we can reach is under 20 and thank GOD we survived until now ( me and my sister) We seek help and researched and now we live an almost normal life....... I'm glad to have known another inspiration like you.God Bless!

Hi Lyanne thanks for your warm welcome and for your nice words. Yes you're right it's a real good site and I'm happy to share my experiences with all of you and to give some hope that thal. patients can have a quite normal and long life. All the best for you and God bless you too.