"I Want to Feel It All"

[abbeyharry1952]

Beautiful

May Your friend Rest In  Peace.

God Bless.

[bokos1000]

I have also thalassemia and i use Ferriprox

most known in europe as the best drug out there for iron overload

the most known side effects is:

1) high ast - alt (transaminases)

* in the first weeks you take it

2)and sometimes low white corpuscles

* the side effects depends on the patient

i use Ferriprox for the last 5 years and i haven't any side effect ,my ferritin is around 250 and 300 and i can get it lower

* i combine ferriprox ( 6 per day) and desferal 2 times a week

[Cheesewyck]

Another thing I wanted to avoid was all the symptoms cause I have lots of... fatigue, back pains, joint pains & light headed. But then again, I just turned 36 and I don't want to confuse thalassemia with me just getting old... hahahhaha

[Eternalbreeze]

Oh i forgot to mention that since the age of 18 i have a blood transfusion every 3 weeks (2 units each time) and my Hb(haemaglobin) ranges from 9-10 pre transfusion as I am the high transfusion range but when i was a child my Hb before transfusion was usually about 7-8(which can be known as a low transfusion range). I hope this has helped. Take care of yourselves as there are a lot of secondary complications with us thals. xxx

[Eternalbreeze]

(Cont in response to ap2313) I was diagnosed with Thal major at 8 months old because that is when fetal heamaglobin (baby blood) turns to adult haemaglobin (adult blood) I am now 31 and have used the Desfral injections & ferriprox tablets(L1) to combat the iron overload. I am currently taking exjade too. The trend with exjade is that the ferritin does go up slightly before coming down again and it does take a while to get used to. But u choose the right chelation for ur self though. Good luck! x

[ap2313]

i been getting blood transfusions for the past month... i am getting blood every week and now developed high hdl is iron deposits on my heart and liver... and my enzymes are elevated is there anything i am doing wrong? thanks for any help alicia

[Eternalbreeze]

In response to ap2313...Are you sure you are a Thal major as what you are descriping sounds more like thal intermedia. Thal major's are transfusion dependent whereas intermedia only needs a blood transufusion every once in a while and need to becareful with their diet, Although you can start with being intermediate and be treated as a major further down the line...OMG a transfusion everyweek is too much in my personal opinion. Unfortunately Iron overload is a secondary complication,

[Eternalbreeze]

Hi everyone...I rarely comment on anything but reading through some of the comments I felt it was nessecary to respond to a few comments...I am a Thal major and in respone to cheesewyck the symptoms i get before a blood transfusion is that i'm easily tired (like i have little energy to do things), Short of breath/breathless (like an unfit person) & sometimes back ache. Sometimes just walking from room to room can make me tired and out of breath but that is when i'm really low. I hope that helps.

[Cheesewyck]

Thank you so much for clearing that up! I have a follow up appointment next Thursday with my doctor regarding my bones ceasing up and cracking. Did x-ray last week but no response yet which I think is a good sign. Blood may be done next week, should I ask my hb levels? I don't even know what my severity level is, so I always say I'm Alpha Thal. minor since I don't rely on transfusions.

[OceanKingNY]

Very nice work. The songwriters are very talented. :)

[Cheesewyck]

Wow! I didn't think I'd be seeing people posting comments about thalassemia. Most people where I live don't have a clue what it is. I would like to ask to those of you who are major. What symptoms did you or do you encounter when you know something is VERY WRONG compared to when you feel fine? I'm not major but I'm suspecting an incorrect diagnosis.

[tifosilim]

nice touchiong video, am a thal major too, we need to step up the awareness campaign worldwide

[ap2313]

I have Thallasemia Major I was diagonsed when I was six was in remission until 14 then I started getting blood transfusions every week.I am 23 and now have Iron Overload. I am scared that Exjade is not working..

[abukiran]

hi everybody, i know what it is like to live with this condition . I lost my eleven year old daughter KIRAN ASHFAQ because of this condition.Bone marrow transplant was recomended as a cure but we still lost her. I THINK YOU SHOULD ALSO CALL YOUR VIDEO BY THE WORLDWIDE WELL KNOW NAME THALASSAEMIA .

[bogvisu]

I am glad that there is a foundation to help people with this blood disorder! Theresa Sareo vocals are very powerful and I thank her for promoting these very worthy causes in the world today!

[MindFreak50]

i am i are Thallasemia..

[BabyDillGerkin]

very nice - powerful